key: cord-0844434-4r5k31ja authors: Groot, Barbara; Dedding, Christine; Slob, Elise; Maitland, Henriette; Teunissen, Truus; Rutjes, Niels; Vijverberg, Susanne title: Adolescents' experiences with patient engagement in respiratory medicine date: 2020-11-09 journal: Pediatr Pulmonol DOI: 10.1002/ppul.25150 sha: ad08ee3c9381bf03b55089269554d8ad069cee5b doc_id: 844434 cord_uid: 4r5k31ja OBJECTIVE: Adolescent engagement in decision‐making processes in health care and research in the field of chronic respiratory diseases is rare but increasingly recognized as important. The aim of this study was to reflect on adolescents' motives and experiences in the process of establishing an advisory council for adolescents with a chronic respiratory disease. METHODS: A qualitative evaluation study was undertaken to assess the process of starting an advisory youth council in a tertiary hospital in the Netherlands. Data collection consisted of observations of council meetings, in‐depth interviews with youth council members, and moderated group discussions. Data were analyzed using thematic analysis to explore the experiences of the council members (n = 9, aged 12–18 years, all with a chronic respiratory disease). Two‐hour council meetings took place in the hospital to provide solicited and unsolicited advice to improve research and care. RESULTS: Three themes were identified as motives for adolescents to engage in an advisory council: (1) experience of fun and becoming empowered by their illness; (2) the value of peer support and contact; and (3) being able to contribute to care and research. The council's output consisted of solicited advice on information leaflets for patients, study procedures, and dietary menu options for hospitalized children. The council struggled to have their unsolicited advice heard within the hospital. CONCLUSIONS: Council members experienced engagement as beneficial at the individual, group, and organizational levels. However, meaningful youth engagement requires connectedness with, and official support from, officials at all levels within an organization. It may be challenging to treat adolescents with a chronic respiratory disease. 1 Due to complex biological and psychosocial changes, they think, feel, and act differently than younger children. Services are generally not adapted to this age group, while adolescent patients have specific needs. 2, 3 At the same time these patients are making the transition from caregiver-supervised pediatric patients to being young adult patients who need to self-manage their disease and organize their own health visits. Learning from the experiences of adolescents themselves might help to improve care for this group. Although there is growing attention being paid to the participation of adolescents in decision-making processes regarding treatment, service improvement, and scientific health and biomedical research, [4] [5] [6] it is still rare in clinical practice. In clinical research, funders increasingly encourage, and in the Netherlands even require, researchers to work actively with patients to advance research and clinical care. 7, 8 The United Nations Convention on the Rights of the Child (UNCRC) has been one of the driving forces of child participation. [9] [10] [11] The UNCRC advocates that children and adolescents have a right to be heard and considered in any matters affecting them. National legislative frameworks further support children's rights to be actively involved in decision-making processes that affect them. In the Netherlands, where this study was conducted, children at the age of 12 are considered to have a strong voice in decisions on care and health research (together with their parents), and from the age of 16, they have the right to consent or refuse treatment and/or research. With the emergence of new (burdensome) treatments for children with chronic respiratory diseases and the introduction of "transition" clinics and self-management programs for adolescents with chronic respiratory diseases, 12 it is more important than ever to engage adolescents with such diseases in healthcare processes and research to address their needs. In the field of respiratory conditions, a variety of organizations have been successful in involving (adult) patients in international scientific congresses, 13 task forces, research (priority) studies, [14] [15] [16] [17] [18] and international consortia. 7, 19 Despite the growing awareness of its value, the pediatric perspective is often overlooked and there is a lack of knowledge of how to engage children in a meaningful way at an organizational level. 20 Practice shows that youth engagement in hospital settings is not simple. 21 "Adulteration" (dominance of adult perspectives), tokenism (making only a symbolic effect to be inclusive), and pseudo-participation have been observed as common pitfalls for professionals initiating child participation. There is a lack of studies on the collective experiences of pediatric patient engagement from the perspective of adolescents themselves, and seeking to fill this gap may provide more insights for healthcare providers and researchers on how to involve children in a meaningful way in research and care. We, therefore, aim to explore the experiences of adolescents with a chronic respiratory disease who were involved in a newly established advisory youth council in a tertiary hospital. The youth council comprised nine members, aged from 12 to 18 years (at the start of the council), five girls and four boys. All of them have (a) chronic respiratory diseases: eight have asthma (ranging from mild to severe) and one has cystic fibrosis (CF; Table 1 ). Council members were recruited through various channels ( Table 2 ). Every 2-3 months the council members met for 2 h after school in the hospital. During these "pizza-evenings," pizzas, and healthy snacks were served and they discussed questions posed by researchers and physicians as well as their own ideas for how to improve care and research. The meeting was moderated by one or two researchers (E. S. and S. V.). To assess the adolescents' subjective experiences, a qualitative approach was used. Qualitative methods are preferred for gaining an understanding of people's experiences and life-world contexts. 22 The T A B L E 1 Demographics of the youth council participants Table S1 ). The study took place over 22 months, from January 2018 to October 2019, and was conducted by an independent evaluation researcher (B. G.), using thematic analysis, a method for identifying and analyzing patterns in qualitative data. 23 Preliminary findings were discussed with two other independent researchers (C. D. and T. T.) to reach consensus on the identified themes. The process of data collection and analysis was iterative, as the process alternated during the study; the data were analyzed during the process. 24 In this way, the emerging themes could be further explored and validated in the following phase until data saturation was reached. All patients and parents/caregivers gave their consent for participation. The MRB of the Amsterdam UMC, location AMC, regarded the study as not being subject to the Medical Research Involving Human Subjects Act (WMO). Confidentiality was maintained using restricted, secure access to the data, destruction of audiotapes the following transcription, and anonymizing the transcripts. The thematic analysis revealed three themes regarding the experi- In the first year, getting to know each other and peer support proved most important for the participants. Slowly, and with help of the facilitator's encouragement, the council started to discuss topics that were considered important for the hospital. Care professionals and researchers from the hospital also found the council was most useful for offering advice, for example, they it is not that… they should give you an opportunity to say it… often they interrupt me… I am the one with the problem, they need to help me and not draw a conclusion before I have said something." After a year, the members started to become impatient. They felt that they could contribute more and were inspired by stories of other councils in annual national meetings of Dutch youth (hospital) councils. They felt eager to provide unsolicited advice on care, for example, making hospital rooms more child-and adolescent-friendly. However, they experienced dependence on hospital health professionals and management. The council was initiated by researchers on respiratory illness and was not formally established as a client council by the hospital management. Consequently, the council had no official "rights" or "position" within the hospital, where there was limited awareness of its existence. In addition, the facilitator(s) were not in a position to make decisions on all the topics that the council members put on their own agenda: "We bring ideas, but then nothing happens. Many people 'like' us, but they don't really do something with it. They do not know how to collaborate with us." Nevertheless, they did make some small steps. Our study provided unique insights into the views of adolescents with chronic respiratory diseases in pediatric patient engagement in a hospital setting. It shows that adolescents participating in a youth council, value group engagement, and experience different benefits, from having fun to peer support and feeling more confident. However, our study also shows that long-term and meaningful participation requires an organizational shift that moves from an adult-led agenda towards a youth-led agenda. There is a need for an organizational climate in which unsolicited advice is valued and facilitated by formal structures to prevent adolescent patients' frustration and demotivation in the longer term. It is, however, interesting to see how important the meetings are for enabling adolescents not to feel alone, feel supported, have fun, and feel important. In that sense, the meetings have been most successful. One could also imagine that in the coming years the council will be more productive since they have built a strong basis with each other. Previous studies on patient engagement have also shown that this may have an empowering effect on participants 7, 25 ; it enables them to develop self-esteem and positive self-regard, enhances communication skills, and to become active health consumers. In the field of pediatric respiratory medicine, for example, it has been found that a more participatory decision-making style on the part of the health professionals for asthma patients' visits was associated with greater patient satisfaction. 26 Our study also shows that although peer support was considered important, working towards a common goal and "helping others" were also perceived as essential. The youth council was considered to be more than just a peer-support intervention. The aim was to make structural improvements in the hospital to make a positive impact on disease outcomes or disease-related quality of life. 27 An important lesson for clinicians who aim for meaningful adolescent engagement, for example, when implementing transition practices, 1 is that it is essential that voices are not only heard but also acted upon. It should lead to actual changes in policy and practice, such as adapting a management or study protocol or making changes to patient information leaflets. Practice showed that this is not easy and requires a commitment to be embedded within the organization. Similar to our findings, an evaluation of a UK hospital youth council also showed that not being taken seriously as an important barrier to successful pediatric patient engagement. 29 The UK council members valued feedback and evaluation of their ideas to ensure that their investment of time and energy led to actual improvements in the hospital. Continuous reflection, collaboration with participation experts, and taking into account previously identified lessons for meaningful patient engagement from the patient perspective 7,30,31 could help researchers and physicians to set up long-term successful pediatric engagement. This should include adapting information to the target audience and training physicians, researchers, management, and policymakers on adolescent patient engagement. The authors would like to acknowledge the youth council members; Ahmet, Alysia, Elham, Emmanuel, Helianne, Jonathan, Lennart, and Veere for their valuable contribution. In addition, the authors would like to acknowledge Ivo van den Bongaardt, Maud Butter, Erin Smeijsters, and Nienke Sikkens for their help with the organization of the council meetings, and the pediatric pulmonologists and health psychologists from the Emma Children's Hospital, as well as Sandra de Graaf (Lung Foundation Netherlands) for their help with recruitment of the council members. 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