key: cord-0323067-uj7ugtvk
authors: Demers, M.; Pagnini, F.; Phillips, D.; Chang, B.; Winstein, C.; Langer, E.
title: Development of an online Langerian mindfulness program for stroke survivors and caregivers
date: 2021-08-08
journal: nan
DOI: 10.1101/2021.08.05.21261674
sha: fb38d7442ecf1688c856c19d0f680c954e52b13d
doc_id: 323067
cord_uid: uj7ugtvk

Background: Mindfulness is promising for individuals with neurological disorders and caregivers to improve psychological well-being. The potential application of a Langerian mindfulness intervention, focused on the attention to symptom variability, however, is still unknown. Objective: To determine the usability and satisfaction towards an online mindfulness intervention for stroke survivors and caregivers, and the potential effectiveness on psychological well-being. Methodology: Using a mixed-methods design, 11 stroke survivors and 3 caregivers participated in a three-week, online, Langerian mindfulness intervention promoting attention to variability. A semi-structured interview assessed the intervention's usability and gathered feedback. Self-reported measures about psychological well-being were documented remotely three times (pre, post, one-month). Results: Participants were highly satisfied with the intervention. None of the outcome measures changed over time, yet participants reported subjective benefits. Conclusion: Valuable insights were gained from a small sample of stroke survivors and caregivers for the development of a user-friendly and relevant online mindfulness intervention.

Stroke is a heterogeneous condition with possible sensorimotor, cognitive, perceptual, social, and psychological sequelae, impacting community participation (Mayo et al., 2002) . Stroke survivors have poor perceived physical health (Patel et al., 2006) , high incidence of anxiety and depression, (Ayerbe et al., 2013; Campbell Burton et al., 2013) and high levels of dissatisfaction in life, which significantly impact activity and participation (Hartman-Maeir et al., 2007) .

The psychosocial impact of stroke extends to spouses, family, and friends who serve in a caregiver role (Low et al., 1999; Rigby et al., 2009) . Caregivers are crucial in preserving rehabilitation gains and independence levels, maintaining community participation, and conserving the long-term well-being of stroke survivors (Rigby et al., 2009; Visser-Meily et al., 2006) . However, caregiver burden is estimated to be 25-54% (Rigby et al., 2009 ). Compared to age-matched peers, caregivers have diminished general health and vitality, and higher prevalence of depression (Anderson et al., 1995; Morimoto et al., 2003) .

Currently, some of the most promising clinical treatments for distress reduction and psychological well-being improvement are based on the concept of mindfulness (Pagnini & Philips, 2015) . Mindfulness is multifaceted, but here, it is defined using Ellen Langer's nonmeditative approach as the process of actively making new distinctions about a situation and its environment, or its current context, rather than relying on previous categorizations. Previous studies indicate that many presumed physical or psychological limits result from mindlessness, and participants may benefit from increasing mindfulness (Langer, 2012) . While investigation . CC-BY-NC-ND 4.0 International license It is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity.

The copyright holder for this preprint this version posted August 8, 2021. ; https://doi.org/10.1101 https://doi.org/10. /2021 into clinical applications of mindfulness has been initiated, there is still significant clinical potential to explore the mindfulness construct as it relates to chronic disease.

Mindfulness interventions based on Langer's mindfulness theory were shown to increase mindfulness in the general population and other cohorts (Alexander et al., 1989; Grant et al., 2004; Langer, 1993 Langer, , 2000 Langer, , 2009 . One example is an online mindfulness intervention for individuals with amyotrophic lateral sclerosis (ALS) and caregivers. The mindfulness group reported higher quality of life and lower levels of negative emotions, anxiety, and depressive symptoms compared to a waitlist control. Similarly, the caregivers reported lower levels of care burden, depression, and anxiety, and improved well-being and social functioning (Pagnini et al., 2021) . Most differences remained stable over time, indicating a sustained effect of the mindfulness intervention, at least short-term. In stroke survivors, two systematic reviews reported a positive trend for mindfulness-based interventions on psychological, physiological, and psychosocial outcomes. However, stronger evidence remains to be established with robust clinical trials (Abbott et al., 2014; Lawrence et al., 2013) . Given the favorable results for individuals with neurological conditions and their caregivers, a stroke-specific online mindfulness intervention is promising to increase mindfulness, decrease anxiety and depression, and change patients' beliefs about their disability. Most mindfulness-based interventions use meditation and contemplative practices to promote mindfulness (Pagnini & Philips, 2015) . These require relatively significant time and effort, limiting potential real-life application, particularly in clinical contexts and with caregivers (Jani et al., 2018) . The Langerian approach provides easily accessible cognitive exercises inducing openness, cognitive flexibility, creativity, and noticing novelty (Pagnini et al., 2016) .

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The copyright holder for this preprint this version posted August 8, 2021. ; https://doi.org/10.1101 https://doi.org/10. /2021 This study aims to evaluate the usability and satisfaction of a three-week online mindfulness intervention for stroke survivors and caregivers. The secondary exploratory aim is to estimate the potential short-term impact on quality of life and psychological well-being. We hypothesized that the mindfulness intervention will be well accepted and relevant. It is anticipated that minor modifications will be suggested to improve understandability and relevance.

This feasibility study used a mixed-methods parallel design (Creswell & Plano-Clark, 2011) . A qualitative semi-structured interview performed post-intervention allowed a deeper understanding of users' perceptions of the mindfulness intervention. Quantitative self-reported measures were used at three time points to capture changes in psychological well-being.

Stroke survivors and their caregivers were recruited from September 2020 to July 2021.

Recruitment was from an existing IRB-approved database and advertisements through community support groups. Participants were included if they had Internet access on computer, tablet and/or smartphone. Individuals with severe language impairments or those who participated in regular meditation or in a mindfulness program in the past three months were excluded. Participants were purposefully selected to be representative of stroke survivors and caregivers. A sample size of ten stroke survivors was targeted to allow sufficient richness of the qualitative data but was not powered for the secondary aim. This study was approved by the . CC-BY-NC-ND 4.0 International license It is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. (which was not certified by peer review)

The copyright holder for this preprint this version posted August 8, 2021. ; https://doi.org/10.1101 https://doi.org/10. /2021 University of Southern California (USC) Health Sciences Campus IRB. All participants were informed of the risks and benefits, that their participation was voluntary, that their identity would not be disclosed, and provided electronic informed consent collected through Research Electronic Data Capture (REDCap, Vanderbilt University, Nashville, TN).

The three-week intervention consisted of daily mindfulness exercises and education, with distinct modules for stroke survivors and caregivers. The intervention was accessible via a computer or a smartphone and was hosted on the USC Biokinesiology and Physical Therapy continuing education platform Desire2learn (D2L, Kitchner, Canada). The content was adapted from an intervention for individuals with ALS and caregivers (Pagnini et al., 2021) by experienced clinicians, stroke rehabilitation researchers, stroke survivors, and mindfulness experts. Strokespecific exercises were incorporated to ensure relevance for stroke survivors and caregivers. The general structure of the intervention mixed different mindfulness elements (see Table 1 for the topics covered). All exercises for the stroke survivor included audio recordings.

Procedures Participation was done remotely using the HIPAA compliant platforms Zoom (Zoom Video Communications, Inc., San Jose, CA) for meetings, and REDCap for informed signed consent and assessment. Initially, participants met with the first author (MD) to review the study procedures, obtain written consent, collect socio-demographic information, and complete the . CC-BY-NC-ND 4.0 International license It is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity.

The copyright holder for this preprint this version posted August 8, 2021. ; https://doi.org/10.1101/2021.08.05.21261674 doi: medRxiv preprint assessments (see Figure S1 for study timeline). MD oriented participants on how to navigate the online platform. Each participant received a unique identification number and password to access D2L. After a demonstration, participants connected to the platform and accessed the first day's content. MD recorded technical issues, difficulty experienced, assistance provided, and spontaneous feedback reported by participants.

Participants were instructed to accomplish daily exercises at least five days per week. Follow-up emails were sent 48 hours after the beginning of the intervention and every week after.

Participants could contact the research team to ask questions or report difficulties. After completing the intervention, participants completed assessments and a semi-structured interview lasting up to 30 minutes over Zoom. The interview was video recorded and consisted of openended questions about the following topics: feelings, beliefs, reactions to the mindfulness intervention, accessibility of the D2L platform, technical issues, adherence, clarity and relevance of the content, perceived benefits, suggestions to improve user experience, and relevance of the intervention (see Supplementary Material for the interview guide). One-month post-intervention, participants completed assessments using a link sent via email or Zoom.

For stroke survivors, the exploratory self-reported measures were: 1) Stroke Impact Scale (SIS) (Duncan et al., 2003) , 2) Hospital Anxiety and Depression Scale (HADS) (Zigmond & Snaith, 1983) , 3) NIH Toolbox Perceived Stress Survey (PSS) (Kupst et al., 2015) , and 4) Single-Item Sleep Quality Scale (SQS) (Snyder et al., 2018) . For caregivers, the self-reported measures were: 1) World Health Organization Quality of Life-BREF (WHOQOL-BREF) (World Health . CC-BY-NC-ND 4.0 International license It is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity.

The copyright holder for this preprint this version posted August 8, 2021. ; https://doi.org/10.1101 /2021 .08.05.21261674 doi: medRxiv preprint Organization, 2004 , 2) HADS, 3) Zarit Burden Interview (Zarit et al., 1980) , 4) PSS, and 5) SQS. Participants were instructed to consider the impact of the global pandemic when answering the questions.

The SIS 3.0 includes 59 items organized in 8 domains about the impact of stroke on health and life. Each question is scored from 1 (severe difficulty) to 5 (no difficulty) and each domain score is normalized. Higher scores indicate lower perceived impact of stroke. Participants also rated their perceived recovery on a sliding scale from 1 (no recovery) to 100 (full recovery). The HADS is a 14-item scale with 7 items each for anxiety and depression subscales. Each item is scored from 0 to 3, with higher scores indicating higher anxiety or depressive symptoms. The An adapted version of the Post-Study System Usability Questionnaire (PSSUQ) was administered post-intervention to assess D2L platform usability to host the mindfulness intervention (Lewis, 1992) . The adapted PSSUQ consists of 5 questions on perceived satisfaction . CC-BY-NC-ND 4.0 International license It is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity.

The copyright holder for this preprint this version posted August 8, 2021. ; https://doi.org/10.1101/2021.08.05.21261674 doi: medRxiv preprint with the website. Each question is scored on a 7-point Likert scale from 1 (Strongly Agree) to 7 (Strongly Disagree). Higher scores indicate lower usability.

The semi-structured interviews were transcribed verbatim. Two research team members independently analyzed the transcripts using the Braun & Clarke six-step framework for inductive thematic analysis (Braun & Clarke, 2006) . Descriptive statistics were used for the caregivers' data. Since the quantitative data were non normally distributed, non-parametric Friedman tests were used. All statistical procedures were done with JASP version 0.14.1.

MD is a female postdoctoral research fellow with >10 years of qualitative and clinical experience with stroke survivors. Her experience allowed her to understand the realities of stroke survivors and caregivers, but it might also have impacted negative responses from participants not wanting to disappoint the interviewer. BC is a female research assistant and at the time was a master's student in stem cell and regenerative medicine at the USC Keck School of Medicine. She received training about qualitative methods from the research team. Personal assumptions and reflections made during data collection and analysis were noted in a reflective journal and discussed with the larger research team.

Twelve participants (ten stroke survivors and two caregivers) completed the intervention and follow-up assessment, and one stroke survivor was lost at follow-up (socio-demographics . CC-BY-NC-ND 4.0 International license It is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity.

The copyright holder for this preprint this version posted August 8, 2021. ; https://doi.org/10.1101/2021.08.05.21261674 doi: medRxiv preprint summarized in Table 2 ). One additional participant was enrolled in the study but never started the intervention due to an unexpected change in medical status. Another participant dropped from the study after one week due to medical reasons. One additional caregiver supported her parents to complete the intervention. She participated in the interview but did not complete the assessments. Only three participants were familiar with mindfulness, including previous participation in guided meditation or mindfulness.

Four main themes emerged from the qualitative data analysis: 1) Satisfaction with and adherence to the mindfulness intervention, 2) Poor user experience with the web-based platform, 3) Varied perceived benefits from the intervention, and 4) Importance of tailoring the mindfulness intervention (see Supplementary material for individual codes in a word cloud and additional quotes). The themes reflected the participants' perspectives towards the intervention, the difficulties experienced, and potential changes to implement.

The first theme describes the knowledge and insights gained from participating in the mindfulness intervention. Eight participants expressed high satisfaction and qualified the intervention as 'good', 'very good', 'enlightening,' or 'interesting'. The intervention aligned well with or exceeded participants' expectations. They appreciated that mindfulness practice was accessible, easy to implement in everyday activities, and encouraged reflection. Participants . CC-BY-NC-ND 4.0 International license It is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity.

The copyright holder for this preprint this version posted August 8, 2021. ; https://doi.org/10.1101/2021.08.05.21261674 doi: medRxiv preprint liked that the exercises were simple and easy to understand and apply to their everyday lives.

One participant found some exercises were emotionally challenging. Three additional participants had more nuanced opinions of the intervention and expressed being somewhat satisfied with the program. All reported that the exercises offered were not new to them, despite not being familiar with mindfulness. One found some exercises bothersome, as they did not consider her stage in stroke recovery and her capacity. She also reported that some of the language was negative. Another participant felt the intervention lacked direct feedback from a therapist. One felt it was more relevant early post-stroke. Participants adhered well to the intervention timeline and occasionally skipped days because they were busy, or were fatigued. Some participants maintained a consistent schedule to facilitate adherence. Some participants completed two days at once to compensate for missed days.

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The copyright holder for this preprint this version posted August 8, 2021. ; https://doi.org/10.1101/2021.08.05.21261674 doi: medRxiv preprint S03: "I got to confess to you, I would miss days and then I would go back, I would do a couple of days at a time."

The number of exercises was considered appropriate and took 15-30 minutes to complete.

Opinions about the ideal length of the intervention varied: some participants preferred a twoweek intervention, others found the length appropriate, and one wished it lasted longer. S03: "It was right at the limit I would say it. I mean, I mean (.) if you would have gone on for another week, it would've been more than I wanted. It was pretty perfect." S11: "I think the program should be longer. Three weeks, I don't think it's enough to get into mindfulness. But the length of each exercise I thought was good. Ten minutes is a good length of time."

Theme 2 -Poor user experience with the web-based platform

The second theme addresses the usability and accessibility of the D2L platform, accessed on a smartphone, tablet, or computer. The D2L platform was not perceived as user-friendly (see Table   3 for suggestions for improvements). Important issues with accessibility were identified.

Features, such as tests and grades, were distracting. The content was not directly accessible after signing in. The browser did not systematically load the page where the participant left off, requiring them to go through the table of contents each time they logged in. Moreover, the time to download videos was long, and consequently most participants skipped the videos. Two participants mentioned that the pictures were unnecessary and distracting. Participants liked the . CC-BY-NC-ND 4.0 International license It is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity.

The copyright holder for this preprint this version posted August 8, 2021. ; https://doi.org/10.1101/2021.08.05.21261674 doi: medRxiv preprint checkmark feature that indicated which exercises were completed. Four participants experienced technical issues with their Internet connectivity or their device, which limited their ability to follow the intervention. Insert_Table_3_near_here . CC-BY-NC-ND 4.0 International license It is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity.

The copyright holder for this preprint this version posted August 8, 2021. ; https://doi.org/10.1101/2021.08.05.21261674 doi: medRxiv preprint Theme 3 -Varied perceived benefits from the intervention The third theme encompasses the perceived gains related to the mindfulness exercises and education. The most common ideas were that the intervention increased participants' general knowledge about mindfulness and helped change their mindsets, attitudes, and viewpoints. Many participants gave examples of how they applied mindfulness in their daily lives. Participants highlighted that the intervention stimulated discussion with their loved ones and gave them tools to navigate challenging or stressful situations. Two participants with poor sleep quality reported that the program offered strategies to go back to sleep. S03: "It was, overall, very beneficial to me. Mindfulness was kind of like shifting your viewpoint just a little bit and that little bit was helpful." C01: "It's sort of like a meditation, but active meditation. It helps you get your mind from a negative thought to a positive thought."

Theme 4-Importance of tailoring the mindfulness intervention

The fourth theme describes the strong perception that a mindfulness intervention should be personalized and adapted to individual situations, including a global pandemic. Both stroke survivors and caregivers discussed how stroke changed their lives. Stroke survivors mentioned how their routine, meaningful activities, roles, and social participation were disrupted by the stroke. Most exercises were considered relevant. However, participants felt that some exercises were not targeted to their capacity, stage of recovery, or living situation. For example, one exercise encourages stroke survivors to use their paretic hand to perform activities. For those . CC-BY-NC-ND 4.0 International license It is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity.

The copyright holder for this preprint this version posted August 8, 2021. ; https://doi.org/10.1101/2021.08.05.21261674 doi: medRxiv preprint with severe impairments, holding an object was impossible, and consequently such exercises created frustrations. One stroke survivor mentioned that some exercises required to express emotions, which was in conflict with her own culture. Perception of stroke recovery differed greatly between participants. Many were dissatisfied with their recovery, often due to slower recovery or persisting impairments. Their outlook on life changed at different time points poststroke, which stressed the importance of tailoring exercises. The COVID-19 pandemic greatly impacted all participants and heightened uncertainties. Most participants expressed how the pandemic impacted their answers. The pandemic allowed most participants to have the time to take part in this program, as many usual activities were disrupted.

One participant had many groups/interventions on the computer, which limited his willingness to . CC-BY-NC-ND 4.0 International license It is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity.

The copyright holder for this preprint this version posted August 8, 2021. ; https://doi.org/10.1101/2021.08.05.21261674 doi: medRxiv preprint do another online intervention. Three participants mentioned that some exercises were not aligned with the global events.

S04: "It is hard to say that COVID didn't influence anything. Every single aspect of life is affected by ." C01: "COVID has us doing not as much, so that [intervention] was helpful."

The self-reported measures took between 10-90 minutes to administer remotely. Two caregiverstroke dyads required assistance from a researcher to complete the assessments. Among stroke survivors, there were no significant changes in scores for the SIS, HADS, PSS, with high variability between participants (Table 4 ). The HADS showed a trend towards reduced anxiety and depression, with five participants showing lower levels of anxiety and depression postintervention ( Figure 1 ). Four participants improved in their sleep quality from pre to post intervention, but this was not maintained at the one-month follow-up. During the qualitative interview, participants mentioned extenuating factors, such as pain or stress from the US elections, to explain sleep quality deterioration. The caregiver sample was not large enough to assess changes from the intervention, and no clear changes were noted.

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The average usability measured with the PSSUQ was 13.7 ± 10.0 (range from 5-33), which indicates limited usability. Five participants with limited computer savviness experienced difficulty accessing the website content during the pre-intervention trial. The most common difficulties were signing in with the username and password (n=3) and navigating the platform (n=5). Minimal verbal guidance resolved difficulties. No difficulties were experienced by those with greater familiarity with technology. One dyad continued to have trouble accessing the content and required support from the research team.

This feasibility study aimed to evaluate the usability, satisfaction, and potential effectiveness of an online mindfulness intervention for stroke survivors and caregivers. The experience from the mindfulness intervention was positive overall, with high levels of satisfaction and good adherence to the daily exercises. The qualitative and quantitative data highlighted usability challenges with the online platform used. Participants perceived subjective benefits from the intervention, yet no significant changes were observed on self-reported measures. Positive trends from pre to post were noted on the HADS and the SQS. Insights from stroke survivors and participants offered simple strategies to better tailor the intervention, improve the relevance of the exercise, and facilitate accessibility.

Perspectives from a heterogeneous sample of stroke survivors and caregivers were valuable to push beyond usability testing. In recent years, more studies explored the benefits of mindfulnessbased stress reduction or mindfulness-based cognitive therapy for stroke survivors (Abbott et al., 2014; Lawrence et al., 2013) . However, to our knowledge, only two studies captured the . CC-BY-NC-ND 4.0 International license It is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity.

The copyright holder for this preprint this version posted August 8, 2021. ; https://doi.org/10.1101 https://doi.org/10. /2021 experience of stroke survivors with mindfulness (Jani et al., 2018; Wang et al., 2019) . Jani et al. (2018) found that a 2-hour in-person mindfulness-based stress reduction showed positive acceptability, but participants had trouble maintaining focus and concentration throughout the session. Similarly, Wang et al. (2019) showed that a mindfulness and relaxation program is acceptable, user-friendly, and beneficial for stroke survivors. This is the first study that used Langerian mindfulness with stroke survivors. The integration of mindfulness practice in everyday life seemed particularly appreciated and could be relevant for the clinical applicability and scalability of the intervention. Compared to meditation, Langerian mindfulness with attention to symptoms variability requires significantly less time and is easily implementable at a time convenient for the participant, which can vary from day to day.

Positive benefits were reported in the semi-structured interview, but this was not observed in the self-reported measures of psychological well-being. The small sample size and large interindividual baseline variability may explain why changes were not detected. Moreover, the evaluation timeline may be too short to observe changes in quality of life and psychological well-being. Participants reported implementing mindfulness strategies in their daily lives, such as changes in mindset during negative events or better ability to remain calm to solve problems in challenging situations. This suggests that the skills acquired during a short three-week online intervention can be transferred to some extent to everyday life. Despite the lack of quantitative changes, the subjective reports seem in line with the results obtained with a similar intervention on people with ALS (Pagnini et al., 2021) .

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The copyright holder for this preprint this version posted August 8, 2021. ; https://doi.org/10.1101 https://doi.org/10. /2021 Many participants experienced difficulties with accessibility and usability of the D2L platform, especially those with limited familiarity with technology. The D2L platform was not perceived as user-friendly, despite its wide use in higher education. The results contrast previous studies that found D2L to be user-friendly and intuitive to use in a tailored academic environment (Aldraheti, 2020; Chawdhry et al., 2011) . The primary difference concerns our cohort (older adults, lower levels of education, less exposure to technology and more clinical issues). The results suggest that the initial training and visual guide provided were not sufficient for participants with limited familiarity with computers. Modifications may involve the use of shortcuts to direct participants to the content, simplifying the navigation menu, and providing additional guidance and training.

This study is not without limitations. Our sample was small and heterogenous. This study was not powered to detect changes in the self-reported measures, but it provided guidance on the selection of outcome measures for a larger intervention study. The possibility of a social desirability bias is not excluded since participants may have wanted to please the researchers.

The results may have limited generalizability due to the small sample size and strong proportion of males and people with right hemisphere stroke. The entire study was conducted during COVID-19, which may have significantly disrupted daily life and afforded time to participate in this kind of intervention.

This study supports the feasibility of a three-week online mindfulness intervention for stroke survivors and caregivers. Feedback and suggestions from the participants provided guidance to . CC-BY-NC-ND 4.0 International license It is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity.

The copyright holder for this preprint this version posted August 8, 2021. ; https://doi.org/10.1101/2021.08.05.21261674 doi: medRxiv preprint better tailor the intervention and improve the usability of the platform used. Based on the results obtained, the next step is to make changes to improve the intervention, such as simplify access to the content, modify exercise wording, offer options to record notes, customize the exercises based on current ability or situation, and provide audio recordings for all modules. This study is a precursor step in the design of a large, randomized control trial to determine the effectiveness of an online mindfulness intervention with attention to symptom variability for stroke survivors and caregivers. . CC-BY-NC-ND 4.0 International license It is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity.

The copyright holder for this preprint this version posted August 8, 2021. ; https://doi.org/10.1101 https://doi.org/10. /2021 The key concept is that the world around us, and each one of us, is always changing. If you are able to notice subtle changes in the external word, as well as in how you feel, you will find that negative feelings, whether psychological or physical, are not always present. Thus, you can change the usual tendency to view things as if they are unchanging -a mindless construct of the world.

Try to find 5 ways in which the weather is different today than yesterday.

The same event may be seen as either positive or negative, depending on one's perspective. If we change our point of view then our perception about what we were certain is a negative event can, from that different perspective, be viewed as positive. That is, we can reframe a negative perception of an event by answering a simple question: "In what ways might this be good for me? Or "What about this situation could be seen as good?" With the disability following a stroke, we can try to find a different perspective about the illness. We see that our experience of the illness is a reflection of the view we take rather than of the illness itself. We can find many individuals who are able to reframe their experiences of their own illnesses by including views that express the positive experiences or opportunities the illness has brought to their lives. This perspective shifting is a very mindful exercise and a very valuable coping resource.

You miss a bus to meet an important person in your life. Try to find 5 reasons how that could be positive.

A mindful view of the future acknowledges its ultimate unpredictability, as is the course of the participant's disability. Such unpredictability opens up the possibilities for a more positive perception of the future than had been conceived.

Allow yourself to consider this question: Can you predict the course of your stroke recovery? If so, please find 3 ways in which your certainty could be faulty. For each of those reasons, describe the way in which it is . CC-BY-NC-ND 4.0 International license It is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity.

The copyright holder for this preprint this version posted August 8, 2021. ; https://doi.org/10.1101 https://doi.org/10. /2021 both positive and negative. Sense Making Disability and symptoms tend to be perceived as something that stays unchanging. However, it is unlikely that all symptoms are always present at the same intensity or at the same level of impairment. Reflecting about symptoms and your ability to do things that are important to you allows for understanding their variability and making sense of this can help develop an understanding that there are often many reasons for their variability. Once we can identify even a few reasons, feelings of increased control and awareness follow.

Think about your past, particularly the most meaningful moments in your life. Can you see how these events may have led to one another or somehow be connected in some way?

Novelty seeking and novelty producing

The attitude of paying attention to new elements requires an open and curious orientation toward the world and towards oneself. Novelty producing actively creates new categories of thinking rather than relying on previously constructed categories and distinctions about the world (Langer, 1989) . Novelty seeking is also related to the concept of flexibility or using feedback from the environment to make any responsive adaptations to one's thinking and behavior. These attitudes may be improved in an effort to be more mindful.

We invite you to consider this: What are 5 ways you could make something in your home more personal and appealing to you?

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The copyright holder for this preprint this version posted August 8, 2021. ; https://doi.org/10.1101/2021.08.05.21261674 doi: medRxiv preprint Table 3 . Suggestions for improvements to the Mindfulness program

Quotes Tailor exercises based on abilities, stages of recovery and living situation S10: "So sometimes it would say things [.] they would ask me to do things that I wasn't capable of doing. I, I'm not for instance going [..] I'm not going to the store right now for instance and, you know, like it might say 'go look at a flower' or something that wasn't available or something like that." Ensure that the exercises reflect the current COVID-19 situation S04: "In these COVID time, no one is taking showers everyday (laughs). No, but there are things that are out of sync to what normally happens or when it happens." Simplify access to the content S05: "I felt I should be able to log in and be where I left off the time before and go forward. But every time, I had to log in, then find the program, then find where I was, and it wasn't intuitive the way you do it and sometimes it wouldn't go. You have to go to portal [.] like it wasn't like you click on one thing." Remove the pictures and artwork S07: "I think the only part that perhaps is unnecessary was the artwork." Offer a place for participants to record their thoughts and ideas after each exercise S01: "I think that somebody could if they had a place where they could type in some notes. [The participant] could give you a response that would maybe be more mindful about how that topic area affected them." Change the wording used to be more inclusive S11: "Sometimes I had trouble with particular articles like it said: 'come up with three ideas why this might be a good thing or a bad thing'. I could only come up with one idea." Interviewer: "Would you suggest that we just say: 'Come up with ideas' plural and not specify a number?" S11: "It would actually be less like you are failing." Provide an overview of the daily exercises and specify times at which each exercise should be done S01: "some of the exercises have an introduction to them and then followed by exercises. 'Time just goes straight to exercises and hum I think you should be trying to have them be more consistent always have them go to an introduction. For example, even if the introduction is just to say: 'Today, we're just doing exercises' and no intro." S04: "It would be nice to have maybe like: 'do this in the morning', 'do this in the evening', 'do this…' so that you sort of [..] I think there could be a little bit of structure around when in the time of the day some of these prompts could come up." Offer audio recordings for the entire program S11: "It would be good if [the introduction to each module] would be recorded also, because some people have a hard time reading after having had a stroke or a hard time concentrating." . CC-BY-NC-ND 4.0 International license It is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. (which was not certified by peer review)

The copyright holder for this preprint this version posted August 8, 2021. ; https://doi.org/10.1101/2021.08.05.21261674 doi: medRxiv preprint Add a concluding statement at the end of the program S05: "at the end of this, you will A, B, C, D. There was no feel for that. Like at the end of this, you just feel nothing. I mean, even if they said you may not notice any changes or anything, but I felt like I was supposed to know at the end of this something." 9.0 ± 1.4 9.5 ± 0.7 7.5 ± 2.1 6.0 ± 1.4 7.5 ± 2.1 9.0 ± 2.8 NIH Perceived Stress 33 ± 1.4 28.5 ± 2.1 29.5 ± 35 Single-item sleep Quality 3.5 ± 0.7 7.5 ± 2.1 7.0 ± 2.8 Abbreviation: NIH: National Institute of Health, WHOQoL-Bref: abbreviated World Health Organization Quality of Life, transformed scores (0-100). *One caregiver did not complete the outcome measures.

. CC-BY-NC-ND 4.0 International license It is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. (which was not certified by peer review)

The copyright holder for this preprint this version posted August 8, 2021. ; https://doi.org/10.1101/2021.08.05.21261674 doi: medRxiv preprint . CC-BY-NC-ND 4.0 International license It is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. (which was not certified by peer review)

The copyright holder for this preprint this version posted August 8, 2021. ; https://doi.org/10.1101/2021.08.05.21261674 doi: medRxiv preprint . CC-BY-NC-ND 4.0 International license It is made available under a is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity.

The copyright holder for this preprint this version posted August 8, 2021. ; https://doi.org/10.1101/2021.08.05.21261674 doi: medRxiv preprint

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