Understanding the facilitators and barriers of stroke survivors’ adherence to recovery-oriented self-practice: a thematic synthesis

Figures & data

Table 1. An illustration of the qualitative synthesis: analytical themes, descriptive themes, codes, and illustrative quotations.

Analytical themes	Descriptive themes	Example codes	Example quotations for illustration
The meaning of “self” in self-practice	The effect that the patient’s past experience with healthcare has on their adherence to self-practice	Distrusting the healthcare system/providers	“Janice even referred to her experience with formal rehabilitation as ‘McDonald’s Rehab,’ inferring depersonalization and haste. ‘People don’t care…caseloads are too big…three patients in 45 min!’” [34]
		Replacing prescribed self-practice with other options	“… I went to DS (another health center for alternative medicine) for ten days. That is another form of treatment. I also went to Kerala and border of Karnataka to get different herbal oil.” [24]
	Self-efficacy effect on adherence to self-practice	Taking responsibility for recovery process	“Sometimes I did another exercise because I thought it was more useful” (P1), and “we made adjustments when we thought they made the exercises more effective.” (P7) [35]
		Being ignorant about post-stroke rehabilitation	“The most striking issue in relation to non-adherence found in this study was participants’ lack of knowledge of their own responsibility to participate in rehabilitation.” [11]
		Justifying the need for self-practice	“Exercise is the only treatment for it. What I have achieved so far will deteriorate if I don’t exercise, that’s what the doctor told, so I should keep doing exercises to maintain whatever I have achieved. There is no other medicine for it.” [24]
		Acknowledging improvement as a key motivational factor	“They perceived exercises as positive and meaningful if they led to an improved performance or if the exercises were linked to a meaningful activity of daily life. Exercises were also seen positive if they were achievable although difficult. Vice versa, if these conditions were missing, patients disliked their exercises…” [36]
	Interest in the practiced activity	Variety of exercises increases interest	“…two participants (P1, P2) indicated a preference for activities varying in type and amount. When asked about one activity, P1 said ‘handle open close no, little bit’ but described a second activity as ‘oh yeah good good A+.’” [48]
		Practicing functional activities increases interest	“All participants expressed interest in completing activities to improve UE. When asked if he liked the activities, P5 responded, ‘onward and upward, come on let’s go’ to convey his motivation.” [48]
		Games and accessories create interest and fun	“Most of the participants in the study found NeuroGame Therapy to be engaging and enjoyable…Michael commented that ‘And it’s exciting. when I can actually make something happen with my brain with my affected side.’” [37]
	The emotional ability of overcoming hurdles	Facing different grief phases	“It was horrifying getting a stroke…It took at least 6 months to get over the shock, and the fact I was functionally disabled!” [11]
		Coping with pain and fear of doing harm	“Feeling scared of doing harm especially where pain was present led to a loss of confidence to ‘have a go’. Depression commonly overcame them, allowing hope for recovery to fade.” [12]
		Confronting challenge and failure	“Michael stated, ‘if you get frustrated and discouraged with what you’re trying to do you just won’t do it.’ Hannah echoed this sentiment stating, ‘but that’s another thing an’ I get so frustrated and then I’m just a ball of tears…It doesn’t seem worthwhile to make myself that upset.” [37]
Identifying self-practice as a team effort	Beyond prescribing: Healthcare professionals in self-practice	Healthcare professionals input matters	“I took Botox and doctor told me that only taking Botox is not enough. Botox means the dominant muscle is given an injection to make it weak. And strengthening the opposite group of muscles is required so that my fingers could become straight. So I started exercises again.” [24]
		Providing ongoing supervision	“during study participation, they knew that a therapist would connect and talk with them, and so they felt more obliged to complete their assignments…” [39]
		The impact of sharing poor prognosis with the patient	“Negative or dismissive attitudes from others created or confounded the desire to ‘give up’. Alternatively, this fired the motivation of others who used such an attitude as a driving force to recover, just to prove them wrong.” [12]
		Providing feedback	“I would feel much obliged if the support was there initially…if they could show me in the right direction and then leave me to it.” [40]
	Patient-caregivers/informal-therapist dyad	Working as a team with informal therapist	“So when it was him by my side he would distract me and we would forget I had a stroke and just walk and talk about life. I wouldn’t do that with a nurse or with a therapist. Because with him I have a real conversation, it’s different.” [35]
		Feeling supported and understood by relatives	“My family stood by my side when I got the stroke. They’ve helped me exercise; making me do ADL by myself, walk etc.” [11]
		Dependency on family and caregivers	“Nobody is there to help or guide me to do exercise. My husband is a daily wage worker, and he leaves home in the morning and comes back in the evening, my daughter goes to the college and comes back in the evening, and my son has gone abroad to work. So, I was not doing anything as I was alone at home.” [24]
		Directing and managing caregiving to help in self-practice	“patient 4 was somewhat disappointed as her family seemed not to understand the importance of the therapy and did not support her the way she had hoped for. However, to facilitate her regular daily training, she chose more than one non-professional coach and split the 2-hour training between her non-professional coaches.” [36]
		Avoiding being a burden by preferring independent practice	“Work or household commitments of the non-professional coaches were other reasons patients reported in the interviews for practicing alone and not always together with their non-professional coach as determined at the beginning of the four-week course of homeCIMT.” [36]
Self-practice that is grounded in one’s reality	Time and cost considerations	Self-practice is schedule adaptive	“Daytime I cannot (.) I’m sleeping, because I work at night (.) the time when I’m free (.) nobody will come and do it (…) Because tele-rehab, I can choose the time that I want to do.” [38]
		Cost-effectiveness of supervision by technology	“Yes well face to face therapy is always better but it [computer therapy] is very cost-effective isn’t it?” [40]
	Incorporating self-practice in the energy budget management	The energy tradeoff (between life activities and exercise while physical and mental energy resources are limited)	“homeCIMT was not always easily carried out in everyday life. For example, patient 4 experienced the increased use of the affected arm for activities of daily life in the afternoons, induced by homeCIMT, as particularly exhausting. She explained that ever since her stroke, her ‘battery’ only lasted until noon.” [36]
		Post-stroke fatigue makes participation difficult	“two participants reported difficulties with fatigue and found it more taxing to engage with the game when tired. For example, Jennifer reported that ‘I’m really over-worked or over-tired, I find it harder to get the, the strength and finding it.’” [37]
	Structural and mechanical variables	Home structure and space limitations	“Two patients mentioned that they had limited space in their homes. Therefore, despite all the benefits of the tele- rehabilitation systems, they found it inconvenient at times.” [39]
		Barriers caused by technology	“Actually I can, but as I said, always unable to connect. Then I feel discouraged.” [38]
		Dependency on the technology operators	“…if this SMS (with exercise instructions) had not, if they had not come … it would get me like that, I would not know that I need to practice these things on my own.” [33]
		Replacing live feedback with technology solutions	“witnessing their progress over time helped participants maintain continued use of the tele rehabilitation system…they noticed the progress when they could play the games faster, easier, and with higher scores.” [39]
	Severity of impairments	Having not a lot to work with	“Many also believed they did not have enough movement to work with and therefore had nothing they could do to practice. ‘…I have got no use so I can’t improve what I’ve got if I haven’t got anything.’” [12]

Figure 1. PRISMA.

Table 2. Characteristics of included studies.

Authors and year of publication	Country	Aim of the study	Sample	Data collection	Analysis	Main findings
Chen et al. (2019) [39]	USA	To investigate patient-perceived benefits of and barriers to using telerehabilitation system at home	13 participants post-stroke 2 female 11 male	In-depth semi-structured interviews	Thematic analysis	Mostly positive experiences with the system. Functional, cognitive, and emotional improvements were described. Barriers included technical support, home environment physical restrictions, and adjusting difficulty levels.
Fors et al. (2019) [33]	Sweden (data collection from Uganda)	To evaluate the technical usability of an SMS-based reminder system as well as user opinions when using such a system to assist clients to remember to perform daily rehabilitation activities	15 stroke survivors. Gender was not clear	Semi-structured interviews	Unclear	Reminder and follow-up system were of benefit in the rehabilitation process.
Mahmood et al. (2019) [24]	India	To explore the factors influencing adherence to home-based exercises among community-dwelling stroke survivors using an intervention mapping approach	10 stroke survivors 5 female 5 male	Semi-structured face-to-face interviews	Conventional content analysis	Key factors, such as lack of awareness about stroke recovery and exercises, poorly perceived recovery, hopelessness, and lack of emphasis on exercises by healthcare professionals led to non-adherence.
Stark et al. (2019) [36]	Germany	To investigate the experiences of chronic stroke patients and non-professional coaches with home-based constraint-induced movement therapy	13 post-stroke patients and 9 non-professional coaches 7 female 6 male	Semi-structured interviews	Hermeneutic phenomenological analysis	Training together may create positive experiences as well as strain. Using the affected arm in everyday life is challenging. Self-perceived improvements positively affecting participation.
Tyagi et al. (2018) [38]	Singapore	To explore the perceived barriers and facilitators of telerehabilitation by stroke patients, caregivers, and rehabilitation therapists in an Asian setting	13 stroke patients among other participants 6 female 7 male	Focus groups and semi-structured in-depth interviews	Thematic analysis	Facilitators noted by the patients: affordability and accessibility. Barriers noted by the patients: equipment setup and limited scope of exercises.
Vloothuis et al. (2018) [35]	Netherlands	To understand how participants manage the caregiver-mediated exercise together	7 participants post-stroke 2 female 5 male	Semi-structured interviews	Inductive thematic analysis	Caregiver-mediated exercises were found to enhance individualization of the treatment plan. It seemed to make the patients and the caregiver more actively involved in the rehabilitation process.
Wallace et al. (2018) [48]	USA	To examine the perceptions of people with aphasia as it relates to modifications to the home program that could influence participation	7 post-stroke patients with aphasia 1 female 6 male	Semi-structured interviews and support groups acting as focus groups	Thematic analysis	The music as facilitator or barrier. Preference of variety of activities and characteristics of the program instructions as helpful or vice versa. Also, the motivational drive that comes from seeing results.
Brown et al. (2015) [37]	USA	To qualitatively describe: 1. Upper extremity use at home 2. Previous home exercise or activity programs 3. The acceptability of NeuroGame Therapy, a novel upper extremity home program	10 people post-stroke 4 female 6 male	Pre and post-one-on-one interviews	Thematic analysis	1. Infrequent use of the affected upper extremity 2. Previous home programs were non-specific, not carried out, or were self-modified 3. The suggested program is engaging and motivating but with little results
Palmer et al. (2013) [40]	UK	To investigate factors that affect the acceptability of independent home computerized aphasia therapy practice	14 patients and 10 caregivers of the patients 7 female 7 male	Semi-structured interviews in an embedded qualitative study	Thematic analysis	The independence, flexibility, and repetition afforded by the computer were viewed as beneficial and the personalized exercises motivated participants. The practice has created fatigue that interferes with other life activities. A need for further tailoring of the exercises.
Kåringen et al. (2011) [11]	Norway	To describe elderly stroke patients’ experiences with a focus on long-term adherence to physiotherapy home exercise	8 stroke patients 2 female 6 male	Semi-structured interviews	Content analysis	This study emphasized the importance of empowerment in achieving patient adherence to long-term home-based therapies.
Barker et al. (2005) [12]	Australia	To explore how stroke survivors define recovery, identify factors they believe influence recovery, and strategies to maximize that recovery	19 stroke survivors and 9 spouses of the patients 7 female 12 male	Focus groups and in-depth interviews	Data analyzed using principles of grounded theory	Keeping the door open for recovery. Drawing on support from others. Keeping going with exercise. Finding out how to keep moving ahead.
Gillot et al. (2003) [34]	USA	To explore and describe the perceptions and experiences of two survivors of stroke who participated in a constraint-induced movement therapy home program	2 stroke survivors 1 female 1 male	Five semi-structured with each person	Thematic analysis	Motivational factors were raised, and neurorehabilitation as an individual process was discussed in depth.

Figure 2. Model representing the analysis results.

Table 3. Table of themes.

Overarching theme	Tailoring and personalization rather than standardization
Analytical theme	The meaning of “self” in self-practice	Identifying self-practice as a team effort	Self-practice that is grounded in one’s reality
Descriptive theme	The patient’s past experience with the healthcare system	Beyond prescribing. Healthcare professionals in self-practice	Time and cost considerations
Descriptive theme	Self-efficacy	Patient-caregiver/informal therapist dyad	Incorporating self-practice into personal energy budget (resources) management
Descriptive theme	Interest in the practiced activity		Structural and mechanical variables
Descriptive theme	The emotional ability to overcome hurdles		Severity of impairments

Gillot AJ, Holder-Walls A, Kurtz JR, et al. Perceptions and experiences of two survivors of stroke who participated in constraint-induced movement therapy home programs. Am J Occup Ther. 2003;57(2):168–176.

 PubMed Web of Science ®Google Scholar

Mahmood A, Nayak P, Kok G, et al. Factors influencing adherence to home-based exercises among community-dwelling stroke survivors in India: a qualitative study. Eur J Physiother. 2019;23:48–54.

 Web of Science ®Google Scholar

Vloothuis J, Depla M, Hertogh C, et al. Experiences of patients with stroke and their caregivers with caregiver-mediated exercises during the CARE4STROKE trial. Disabil Rehabil. 2018;42:698–704.

 PubMed Web of Science ®Google Scholar

Kåringen I, Dysvik E, Furnes B. The elderly stroke patient's long-term adherence to physiotherapy home exercises. Adv Physiother. 2011;13(4):145–152.

 Google Scholar

Stark A, Farber C, Tetzlaff B, et al. Stroke patients' and non-professional coaches' experiences with home-based constraint-induced movement therapy: a qualitative study. Clin Rehabil. 2019;33(9):1527–1539.

 PubMed Web of Science ®Google Scholar

Wallace SE, Donoso Brown EV, Saylor A, et al. Participants' perceptions of an aphasiafriendly occupational therapy home program. Top Stroke Rehabil. 2018;25(8):599–609. DOI:10.1080/10749357.2018.1517492.

 Web of Science ®Google Scholar

Donoso Brown EV, Dudgeon BJ, Gutman K, et al. Understanding upper extremity home programs and the use of gaming technology for persons after stroke. Disabil Health J. 2015;8(4):507–513.

 PubMed Web of Science ®Google Scholar

Barker RN, Brauer SG. Upper limb recovery after stroke: the stroke survivors' perspective. Disabil Rehabil. 2005;27(20):1213–1223.

 PubMed Web of Science ®Google Scholar

Chen Y, Chen Y, Zheng K, et al. A qualitative study on user acceptance of a home-based stroke telerehabilitation system. Top Stroke Rehabil. 2019;27:81–92.

 PubMed Web of Science ®Google Scholar

Palmer R, Enderby P, Paterson G. Using computers to enable self-management of aphasia therapy exercises for word finding: the patient and carer perspective. Int J Lang Commun Disord. 2013;48(5):508–521.

 PubMed Web of Science ®Google Scholar

Tyagi S, Lim DSY, Ho WHH, et al. Acceptance of tele-rehabilitation by stroke patients: perceived barriers and facilitators. Arch Phys Med Rehabil. 2018;99(12):2472–2477.e2.

 PubMed Web of Science ®Google Scholar

Fors U, Kamwesiga JT, Eriksson GM, et al. User evaluation of a novel SMS-based reminder system for supporting post-stroke rehabilitation. BMC Med Inform Decis Making. 2019;19(1):122.

 PubMedGoogle Scholar