Stroke survivor, caregiver and therapist experiences of home-based stroke rehabilitation: a thematic synthesis of qualitative studies

Figures & data

Table 1. SPIDER tool mapping of search terms and strategy.

Sample		Phenomenon of interest		Evaluation		Design/ Research Type
Stroke		Rehabilitation		Experience		Qualitative research
OR Cerebral vascular accident		OR Intervention		OR perception		OR qualitative study
OR CVA						OR qualitative method
OR Stroke survivor*		OR home				OR interview
OR Stroke patient*		OR home setting
OR Physiotherapist*		OR home rehabilitation
OR Physical therapist*		OR home-based rehabilitation
OR Occupational therapist*
OR Therapist*
OR Caregiver*	AND		AND		AND
OR Carer*
OR Family member*
OR Informal carer*

Figure 1. Flow diagram of search and selection process.

Table 2. Characteristics of included studies.

First author, year, country	Study aim	Total sample size	Participant information and recruitment method	Data collection methods	Time of data collection	Study design and/or data analysis approach
Cameron, 2022, England ^(32)	To gain insight into stroke survivor understanding of early support discharge and the consequent experience of the service they received	30	Five stroke survivors recruited from each of the six ESD services across rural and urban sites in England via the WISE study	1 semi structured interview, conducted during home visits	After participation in the program (time since participation not specified)	Thematic analysis
Cobley, 2013, England ^(38)	To investigate patient and caregiver experiences of early supported discharge services and inform service development and provision	42	27 stroke survivors and 15 carers, recruited from two stroke units in Nottinghamshire, UK	1 semi structured interview, conducted during home visits	Average of 69.5 days (+/- 40.5 days) after hospital discharge	Thematic analysis
Collins, 2016, Ireland ^(20)	To explore stroke survivor experiences of early supported discharge in Ireland	4	4 stroke survivors, recruited from a large teaching hospital in the west of Ireland	1 interview, conducted during home visits	After participation in the program (time since participation not specified)	Interpretive phenomenological analysis
Gilbertson, 2003, England ^(39)	To consult service users and caregivers about their quality of life whilst experiencing the Stroke Association’s home therapy service	20	11 service users who had had a stroke and 9 caregivers, recruited following program participation in Sunderland and Bishop Auckland, UK.	4 focus groups, conducted in a hospital, a community centre and at home	Within 7 – 12 months of participation in the program	Descriptive data and a framework approach
Gillot, 2003, USA ^(21)	To explore and describe the experiences of stroke survivors following participation in a constraint-induced movement therapy home program	2	2 stroke survivors, recruited via a convenience sample through community referrals	5 meetings, including 2 interviews, one observation session and 2 quantitative assessment sessions	Approximately 2 weeks after program completion	Mixed methods study involving a phenomenological (qualitative) and within-subject (quantitative) design
Hale, 2003, New Zealand ^(22)	To explore the perceptions of stroke survivors towards outpatient physiotherapy conducted in-hospital and at-home settings in a New Zealand setting	6	6 stroke survivors, recruited from a rehabilitation department in Wellington, New Zealand	1 in-depth interview, conducted at a venue convenient to the participant	After participation in the program (time since participation not specified)	Phenomenological approach
Hale, 2005, New Zealand ^(34)	To address the paucity of information on the content of physiotherapy home-based programs for people with stroke in New Zealand	20	20 Physiotherapists, recruited across 6 main centres across New Zealand	1 semi-structured interview conducted at their workplace	Not specified	Modified grounded theory
Kåringen, 2011, Norway ^(23)	To describe stroke patients (aged 67+) experiences, with a focus on how physiotherapists can facilitate rehabilitation through empowerment to achieve increased long-term adherence to physiotherapy home exercise	8	8 chronic stroke survivors aged 67+, recruited through purposeful sampling via a community physiotherapy service in Norway	1 semi-structured interview, venue not stated	After participation in the program (time since participation not specified)	Phenomenological approach, using a content analysis for data analysis
Kylén, 2021, Sweden ^(24)	To explore how the environment was integrated into rehabilitation at home, from the perspective of stroke survivors living in Sweden	17	17 stroke survivors, recruited from 3 stroke units across 3 municipalities in southern Sweden	1 semi-structured interview conducted during home visits	Approximately 3 months after stroke	Inductive qualitative content analysis
Levy, 2021, Australia ^(25)	To identify factors influencing adherence to an intensive home-based upper limb exercise program after stroke	20	20 stroke survivors, recruited following their participation in intervention group in The InTENSE RCT, located in Australia	1 semi-structured interview, with the final 10 interviews informed by the Transtheoretical Model of Health Behaviour Change, conducted at each participant residence	After participation in the program (time since participation not specified)	Qualitative descriptive design using an inductive approach to thematic analysis and a deductive analysis mapping to the domains of the Theoretical Domains Framework and the Capability, Opportunity, Motivation-Behaviour (COM-B) model
Lou, 2017, Denmark ^(4)	To investigate how mild stroke patients and their partners experience and manage everyday life in a context of an early supported discharge program	40	22 stroke survivors and 18 partners, recruited via 3 regional stroke teams in Central Denmark	1 semi-structured dyadic interview located within their home	3 – 6 weeks after stroke onset	Thematic analysis
Mahmood, 2019, India ^(26)	To explore factors influencing adherence to home-based exercise following stroke in India	10	10 sub-acute and chronic stroke survivors, recruited via a university hospital located in a semi-urban region of coastal India	1 semi-structured interview located within their home	After participation in a home-based program (time since participation not specified)	Conventional content analysis with codes grouped into categories based on the Social Ecological Model
Nordin, 2015, Sweden ^(27)	To explore stroke survivor expectations of coming home very early after stroke with support and rehabilitation in the home	10	10 stroke survivors, recruited following their participation in the intervention group via the GOTVED RCT, located in Sweden	1 semi-structured interview located on the stroke unit, prior to hospital discharge	0 – 5 days before discharge home, prior to participation in the intervention	A conventional qualitative content analysis
Reunanen, 2016, Finland ^(28)	To explore the experiences of participating in an individualised home-based rehabilitation from the stroke survivor perspective	14	14 stroke survivors, recruited sequentially after their 6-month assessment, following participation in a larger intervention project in eastern Finland	1 face to face interview located at the participant home or workplace	7 months after stroke	Thematic analysis
Rowe, 2018, USA ^(29)	To discover whether theoretical elements of occupational adaptation would be found in qualitative aspects of a task-oriented training at home program (TOTE Home)	4	2 female and 2 male stroke survivors aged 54 – 86 years, recruited via a convenience sample as part of the TOTE Home research trial	Unstructured, informal interviews and field notes collected by the author/researcher	Throughout the duration of the intervention period (30 × 1- hour sessions of training)	Directed content analysis
Scheffler, 2020, South Africa ^(44)	To describe the experiences and perceived needs of stroke survivors, caregivers and health care workers with home-based care, in a context with limited access to and support from formal rehabilitation services, in South Africa	88	41 health care workers, 21 caregivers and 26 stroke survivors, recruited via a larger mixed methods study	4 focus groups with stroke survivors and caregivers and 4 focus groups with health care workers were conducted in community centres	Not specified	A descriptive, exploratory qualitative study, using a thematic analysis framework method
Schnabel, 2021, Scotland ^(40)	To explore the experience of participating in an augmented arm rehabilitation program, with particular focus on acceptability, appropriateness and relevance, from stroke survivor and caregiver perspectives	22	17 stroke survivors and 5 caregivers, recruited via the EVERLAP feasibility RCT, located in Scotland	Semi-structured interviews located in participant homes, the university or hospital. Paired interviews were conducted with all caregivers. Field notes taken during each interview supplemented data collection	At the conclusion of their participation in the therapy program	Framework analysis guided by the Normalisation Process Theory
Scorrano, 2018, South Africa ^(33)	To establish enablers and barriers of adherence to home exercise programmes from the caregiver perspective	7	7 caregivers, recruited from a stroke rehabilitation unit in the North West province of South Africa	In-depth, informal, conversational style interviews located within the rehabilitation unit	3 months after the stroke survivor had been discharged from hospital	Development of codes and categories within a qualitative study design
Stark, 2019, Germany ^(41)	To explore the experiences of stroke survivors and non-professional coaches with homeCIMT	22	13 chronic stroke survivors and 9 coaches (family members), recruited via the homeCIMT RCT population	19 semi-structured interviews (10 with stroke survivors, 6 with coaches and 3 dyads), located within the home	Conducted on average 248 days after RCT completion	Hermeneutic phenomenological data analysis
Stephenson, 2000, England ^(42)	To investigate stroke survivor, occupational therapist and physiotherapist views and perceptions of a home rehabilitation program after stroke, with a particular focus on acceptability	21	15 stroke survivors, 4 physiotherapists and 2 occupational therapists. Stroke survivors were recruited via a health district therapy register. Therapist recruitment not stated.	Stroke survivors participated in 1 semi-structured interview, located within their home. Therapists participated in 2 focus groups, located within their workplace.	After completion of at least 3 consecutive sessions of home-based and outpatient therapy, within an 18-month period	Grounded theory approach
Taule, 2015, Norway ^(30)	To explore mild – moderate stroke survivors experiences with home-based rehabilitation after early supported discharge from hospital	8	4 female and 4 male stroke survivors aged 45-80 years, recruited via the Early supported discharge after stroke in Bergen RCT	1 interview per participant, located within their home or institution	6 - 8 months after their stroke	Interpretive description, systematic text condensation and coping theory.
van der Veen, 2019, Netherlands ^(35)	To explore and describe health care professional’s perspectives on determinants that could influence the implementation of home-based rehabilitation after stroke in the Netherlands	15	15 health care professionals including allied health, nursing and medical professionals, recruited via convenience sample from across the researchers broad national network in the Netherlands	2 focus groups were conducted; location not stated	November and December, 2013	A naturalistic study design based upon a constructionist epistemology, utilising a directed content analysis method
van Dongen, 2021, Iceland ^(31)	To explore how home dwelling stroke survivors deal with stroke-related impairments when rebuilding their lives in the community and their experiences of exercising at home	10	10 stroke survivors, recruited via the National Stroke Association Heilaheill (Iceland)	1 focus group with 6 participants located at a local rehabilitation centre, and an individual semi-structured interview with each participant, followed by an individual semi-structured interview with 4 additional stroke survivors. Individual interviews were located at a location preferred by the participant	January 2016 – December 2017	An explorative and descriptive qualitative study utilising a thematic analysis method
von Koch, 1998, Sweden ^(43)	To explore the differences between therapy sessions conducted within a stroke survivors’ home versus hospital setting	5	3 stroke survivors and 2 therapists (either a physiotherapist or occupational therapist). Recruitment of stroke survivors via therapist recommendation. Recruitment of therapists not specified	Participant observations (in person and video recorded), semi-structured interviews and field notes. Location either the patient home or hospital setting	Observations and field notes occurred during therapy sessions, with interviews conducted after each session.	Qualitative case study design with the analytical method described as patterned coding to categorise themes (thematic analysis)
von Koch, 2000, Sweden ^(36)	To describe the content of a rehabilitation programme involving early hospital discharge and continued home-based therapy after stroke	6	6 therapists (including 2 occupational therapists, 2 physiotherapists and 2 speech therapists)	1 semi-structured interview with each therapist, located within a hospital setting	Not specified	A mixed methods study where the qualitative analytical method was used when analysing therapist data, and described as a thematic analysis
Wottrich, 2007, Sweden ^(37)	To identify the meaning of rehabilitation in the home environment after stroke from the perspective of members of a multi-professional health care team	13	5 Physiotherapists, 5 Occupational therapists, 2 Speech and Language therapists 1 Social worker, recruited through stroke outreach teams within a hospital	Interviews were based on patient allocation, therefore a total of 22 individual interviews were conducted (some team members were involved with more than one patient), located within the hospital setting	Within 1 week after an allocated patient had been discharged from hospital	Qualitative, descriptive and interpretive study based on a phenomenological approach, utilising the Empirical Phenomenological method (EPP).

Table 3. Methodological quality of included studies mapped against the CASP tool.

Study	Q1) Was there a clear statement of the aims of the research?	Q2) Is a qualitative methodology appropriate?	Q3) Was the research design appropriate to address the aims of the research?	Q4) Was the recruitment strategy appropriate to the aims of the research?	Q5) Were the data collected in a way that addressed the research issue?	Q6) Has the relationship between researcher and participants been adequately considered?	Q7) Have ethical issues been taken into consideration?	Q8) Was the data analysis sufficiently rigorous?	Q9) Is there a clear statement of findings?	Q10) How valuable is the research?
Cameron et al. (2022)	Y	Y	Y	Y	Y	Y	Y	Y	Y	Y
Cobley et al. (2013)	Y	Y	Y	Y	Y	N	Y	Y	Y	Y
Collins et al. (2016)	Y	Y	Y	Y	Y	N	Y	Y	Y	Y
Gilbertson et al. (2003)	Y	Y	Y	Y	Y	?	Y	?	Y	?
Gillot et al. (2003)	Y	Y	Y	?	Y	N	?	Y	Y	Y
Hale et al. (2003)	Y	Y	?	?	Y	N	?	Y	Y	Y
Hale & Piggot (2005)	Y	Y	?	Y	Y	Y	?	Y	Y	Y
Kåringen et al. (2011)	Y	Y	?	?	Y	N	Y	Y	Y	Y
Kylén et al. (2021)	Y	Y	Y	Y	Y	?	Y	Y	Y	Y
Levy et al. (2021)	Y	Y	Y	Y	Y	Y	Y	Y	Y	Y
Lou et al. (2017)	Y	Y	?	Y	Y	N	Y	Y	Y	Y
Mahmood et al. (2019)	Y	Y	?	Y	Y	Y	?	?	Y	Y
Nordin et al. (2015)	Y	Y	?	Y	Y	Y	Y	Y	Y	Y
Reunanen et al. (2016)	Y	Y	?	Y	Y	?	Y	?	Y	Y
Rowe & Neville (2018)	Y	Y	?	Y	Y	?	?	?	Y	?
Scheffler & Mash (2020)	Y	Y	?	Y	Y	Y	?	?	Y	Y
Schnabel et al. (2021)	Y	Y	Y	Y	Y	Y	Y	Y	Y	Y
Scorrano et al. (2018)	Y	Y	?	Y	Y	N	Y	?	Y	?
Stark et al. (2019)	Y	Y	Y	Y	Y	?	?	Y	Y	Y
Stephenson & Wiles (2000)	Y	Y	Y	Y	Y	N	?	?	Y	Y
Taule et al. (2015)	Y	Y	?	Y	Y	Y	Y	Y	Y	Y
van der Veen et al. (2019)	Y	Y	Y	Y	Y	?	?	Y	Y	Y
van Dongen et al. (2021)	Y	Y	?	Y	Y	N	?	Y	Y	Y
von Koch et al. (1998)	Y	Y	?	?	Y	N	N	?	Y	?
von Koch et al. (2000)	Y	Y	?	Y	?	N	?	?	Y	Y
Wottrich et al. (2007)	Y	Y	Y	Y	Y	N	?	Y	Y	Y

Key: Y = Yes, N = No,? = Can’t tell.

Table 4. Source documents for descriptive codes and analytical themes.

Analytical Theme	Descriptive Theme	Source Documents
The significance of place	Yearning for home	[20,27,38]
	Comfort and familiarity of home	[4,20,22,24,25,30,32,38,39,42]
	Home is a step in the recovery process	[4,20]
	Home can be isolating and lonely	[22]
	Safety issues of home	[22,32,39,42]
	Practical advantages of home	[22,32,38,42]
	Environmental benefits of home	[24,28,34,36]
	Immersive therapeutic experience of home	[4,31,35]
The impact of relationships	A welcome relationship	[20,22]
	The trusted expert	[24,32,42]
	Therapist as guest	[4,20,34,35,37,39,42,43]
	The effects of a partnership	[22,28,36,42]
	Role expectations	[22,23,25,26,30,31,40]
	A supportive role	[4,32,33,35,40,41,44]
The meaning of therapy	Questioning self and expectations	[4,20,21,34]
	Returning to normality	[20,24,27,28,30,31,36,38–40]
	Purpose and outcome of goal setting	[25,30,32,36,39,40]
	Opportunity and benefits of practice	[4,22–24,28,29,38–42]
	Therapy promotes continuity	[34,37,42]
	Sustaining therapy	[25,26,40]
	Challenges affecting participation	[28,31,33,41]
	Structure of therapy	[30,32,35,37,40,44]
	Enablers to participation	[26,28,29,39–41]

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