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Table S4 - Study methods and results. Details of research methods and results for each included study.
Research category | Paper | Research question | Sampling | Data collection | Data Analysis | Inclusion criteria | Exclusion criteria | Summary of findings | Limitations
Recovering from stroke | [NAME]. The unfolding illness trajectory of stroke. Disability & Rehabilitation.  2002. 24:887-98 | To describe the characteristics of the illness trajectory of stroke during the first year. Aimed at generating a theoretical account of essential characteristics of the adjustment process that patients go through during the first year following a stroke. | Convenience sampling. | Repeated in-depth semi-structured interviews. | Transcribed interview data were analysed and interpreted based on the principles of hermeneutic analysis. | First-time stroke survivors. The primary nurse, in collaboration with the attending physician, screened each new patient for his or her cognitive and language ability to participate in conversation such as in-depth interviews.  Sufficient language ability to participate in in-depth qualitative interviews.  Once the patient had consented, a trial interview was conducted before final decision was made about inclusion. | The presence of additional interfering illnesses (cancer, dementia). | The adjustment process to stroke seems to be gradually evolving and prolonged over most of the first year.  This involves hard physical and psychosocial work on the part of patient. A necessary pre-requisite for adjustment is a realistic conception of the illness and its implications. This takes time and experience to achieve. | The proposed theoretical account must be subjected to further study.
 | [NAME], D. French and [NAME].  [NAME] with the Challenges of Recovery from Stroke Long Term Perspectives of Stroke Support Group Members. Journal of Health Psychology.  2008. 13:1136-1146 | (1) What challenges, both physical and emotional, are perceived after stroke and how do these change over time? (2) What do those who have suffered a stroke perceive has helped them cope with these challenges over time? (3) What sort of psychological support do those who have suffered a stroke perceive would have been beneficial for them during recovery? | Purposive sampling. | Focus groups. | Open, axial and selective coding to develop a set of themes. | In stroke support group.  One focus group included only participants recruited from a support group targeted at young people and the mean age of this group was 32.40 years. | UC | Initially, participants described uncertainty and confusion dealing with their physical symptoms and the challenges of medical care. As recovery progressed, there was increasing realization of physical limitations and the impact of these on their lives. This was accompanied by distress as participants confronted their losses and struggled with attempts to ‘get back to normal’. Acceptance emerged as a critical factor in this process. New ways of doing things and engagement in new roles and activities contributed to acceptance and ultimate adjustment. Acceptance appeared to facilitate new approaches to coping. Social support and psychological support promoted coping, acceptance and adjustment. | Stroke sufferers living in the community who do not attend support groups, and who have experienced milder stroke severity, may express different perspectives.  Authors recognise an element of interpretation inherent in qualitative research.
 | [NAME].  Rules of relevance after a stroke. Social Science & Medicine.  2000. 51:713-723 | To explore how stroke survivors under 65 understand and deal with the activities of the rehabilitation process and how they experience having had a stroke. The second aim was to explore how the same patients and their rehabilitation processes were described in medical records, and ultimately to compare the two results. | Convenience sampling. | Interviews. | Discourse analysis. | All patients hit by a stroke for the first time before the age of 65 and cared for at one Swedish hospital during 1 year were included in the study. The criteria for inclusion were a stroke diagnosis, ability to talk and an understanding of Swedish or English. | UC | Although both groups focus on the recovery of the fragmented body, the meaning of recovery for them is slightly different. The stroke survivors arratives are sometimes characterised by frustration because they were left to manage unfamiliar problems by them- selves. Health care providers must develop strategies that allow the stroke survivors  to achieve an authoritative and knowledgeable position | Study itself is thereby limited to the meaning of discourse and the relationship between a discourse and how people understand and act in different situations
 | E.B. Lynch, [NAME], [NAME], [NAME], [NAME], [NAME], [NAME].  A Qualitative Study of Quality of Life After Stroke: The Importance of Social Relationships. Journal of Rehabilitation Medicine.  2008. 40:518-523 | To identify dimensions of QoL that are important to patients after stroke in order to support development of a disease-specific HRQL measure for stroke. | Purposive sampling. | Focus groups. | Two coders identified themes independently, compared codes, and resolved disagreements. | Age 18 years or older, English-speaking, diagnosed with stroke by a physician, not currently hospitalized or living in an inpatient setting, cognitively able to grant informed consent, and physically able to engage in a 60–90 min round-table discussion. | Symptoms such as severe [NAME] and chronic fatigue. | Key themes identified by patients were: social support, coping mechanisms, communication, physical functioning and independence, altered social relationships. | The generalizability of the findings is limited by the size of the sample. Participants of the focus groups are not fully representative of the stroke patient. Due to the social context of the discussion, some participants may be less likely to vocalize disagreement.
 | [NAME].  Re-thinking stroke rehabilitation: the [NAME] and [NAME] chronic illness trajectory framework. Journal of Advanced Nursing.  2000. 32:595-602 | To explore the application of the [NAME] and Strauss Chronic Illness Trajectory Framework for stroke. | Participant from previous study. | Interviews in hospital and then at monthly intervals over a period of 14 months. | Corbin and Strauss Chronic Illness Trajectory Framework applied to a vignette describing the experiences of one stroke patient. Open codes were reviewed and condensed where possible into a coding frame of themes and sub-themes. | One stroke patient from a previous study of patients' experiences of stroke recovery. | UC | The trajectory framework is shown to be a useful structure that has the potential to enhance the appropriateness of nursing interventions for stroke patients. Patients, having entered the trajectory, do not actually emerge from it over time. The stroke survivor will continue to be a survivor of stroke. This has relevance to the reported psychological trauma of having been through and survived a life threatening situation, and may persist into subsequent acute and chronic illness patterns. | Although the time frame of the original study was long in comparison to other studies in this area, it failed to capture events and responses which capture the downward and dying phases of the trajectory framework.  Validity of the framework can only be established through its application and evaluation in clinical practice.
 | [NAME]  Towards a greater understanding of the experience of stroke: Integrating quantitative and qualitative methods. Journal of Aging Studies.  2003. 17:171-187 | To understand well-being following a stroke in later life. | Purposive sampling. | Open-ended in-depth interviews. | The first transcripts were coded for concepts or themes, which were documented in a coding memo. In subsequent interviews, attention was paid to the appearance of similar concepts as well as to the emergence of new concepts, continuously making comparisons between the coding scheme and interview transcripts in an iterative process. | Community dwelling stroke survivors who were previously admitted for a stroke at Sunnybrook, and Women’s College Health Sciences Centre in Toronto, Canada, at least 60 years of age. | Subjects were not eligible if they had severe cognitive impairments or communication problems (i.e., [NAME]) that would limit their ability to reveal their subjective experiences. | Emphasizes the substantial impact that a stroke can have on subjective well-being in later life. Yet, with the help of various social resources, individuals engage in a dynamic process of adaptation and adjustment in order to enhance their sense of self and report a positive sense of well-being. | Participants in quantitative and qualitative parts of study were not the same so making comparisons between findings of the two is difficult.
 | [NAME] and [NAME].  Post-stroke fatigue: qualitative study of three focus groups. Occupational Therapy International.  2010. 17:81-91 | To qualitatively explore the experience and impact of post stroke fatigue among individuals who had sustained a stroke, were living in the community and were experiencing post-stroke fatigue. | Purposive / Geographic sampling. | Focus groups. | Content analysis. | Male and female adults post-stroke who were beyond the acute care phase of stroke rehabilitation, living within their communities and able to voluntarily participate in this study. | UC | The key finding about the experience of post-stroke fatigue is that after stroke, individuals do not know that they are going to become fatigued, they do not know what to do about it, they cannot find help and they feel troubled when they either limit activities or rest during the day. This leads to speculation as to the problem and cause, with a continual search for acknowledgement and a solution to the challenges they experience in daily life. Expectations for pre-stroke level of participations are high. OT practitioners need to aware of these issues and services need to expand. | Findings cannot be generalized. Limitations of focus groups - comments perhaps not independent, certain members may be hesitant, those who participate may be high functioning and not representative of 'typical' patients.
 | [NAME], K. Heikkila, [NAME], [NAME] and [NAME].  Life experiences after stroke among Iranian stroke survivors. International Nursing Review.  2010. 57:247-53 | To illuminate life experiences and perceptions after stroke among stroke survivors. The research questions are: How do participants experience life after stroke? Which problems are important for them? | Purposive sampling. | Semi-structured interviews. | Grounded theory: Open coding, subcategories, conceptual categories, axial coding, selective coding carried out. | Discharged from hospital since February 2007 through July 2007, were 55–70 years old, had suffered a stroke within the past 3–6 months, were able to communicate and resided in an urban area in Tehran. | UC | When stroke survivors were faced with functional disturbances, they tried to solve this problem. However, they were not able to cope with the new situation because they were faced with a lack of socio-economic support in the form of financial help, social insurance and not receiving any help from others. They lacked care and rehabilitation and as a result, they experienced life disintegration. | Focused on psychosocial phenomena, so findings may be limited to those conditions present during the study period, and are perhaps not applicable to other situations. Small number of participants.
 | [NAME], [NAME], P. Magin, [NAME], J. Sturm, [NAME], [NAME] the experience of post-stroke fatigue in community dwelling stroke survivors: a prospective qualitative study.  Disability & Rehabilitation. 2012. 34: 1376-1384 | To explore the experience of post-stroke fatigue in community-dwelling stroke survivors with and without post-stroke mood disturbance within one year of stroke. | Purposive sampling. | Semi-structured interviews. | Inductive thematic approach using modified grounded theory. | Hospital admission and history and examination consistent with stroke. | Significant cognitive impairment (MMSE <24) or unable to communicate sufficiently to participate in an interview as determined by a  speech pathologist. | Three trajectories emerged regarding the participants’ experiences of fatigue including experience of fatigue, coping strategies and knowledge. The results of this study suggest that in spite of reasonable objective physical recovery post-stroke, fatigue in community-dwelling stroke survivors may be disabling. The essential role of health professionals in this context is to provide support and education regarding fatigue and to promote participation after stroke in therapy programs. Routine practice for stroke services should include fatigue advice prior to discharge. | Did not include severely disabled stroke patients, or those with post-stroke cognitive or language impairment.
 | [NAME], [NAME], [NAME], [NAME], [NAME]. Fatigue after stroke: manifestations and strategies. Disability & Rehabilitation.  2012 34: 665-670 | To describe how fatigue is experienced by stroke survivors, how they understand and deal with fatigue and how fatigue impacts their daily life. | Purposive sampling. | Semi-structured interviews. | A grounded theory approach. | Stroke patient, able to communicate. | Dementia or other severe cognitive impairment. | Patients clearly described and differentiated their experience between: (1) tiredness as an ordinary life event and (2) fatigue as a post stroke life condition. Three fatigue-transforming strategies were identified, being on a mission, settling for less and stalling. Stalling seemed to put the stroke survivors in a particularly vulnerable situation. Over time, some participants moved between these two tiredness/fatigue manifestations and their range of strategies. | Lack of concurrent data collection and analysis. Theoretical sampling guided by preliminary findings might have provided  a better basis for developing a grounded theory of post-stroke fatigue management.
The interaction between patient and health services | [NAME].  The first year of rehabilitation after a stroke - from two perspectives. Scandinavian Journal of Caring Sciences.  2003. 17:215-22 | To capture both similarities and critical differences between how people who have had a stroke and the health care professionals understand what is involved in suffering a stroke. | Convenience sampling. | Interviews with open ended questions, 3 months, then 6 months then 1 year after the admission. | Phenomenographic study - based on similarities and differences, individual descriptions were organized into more comprehensive descriptions of the concepts and eventually into categories and subcategories, which describe the complete meaning variation in the data. Before the process of categorization was finalized the preliminary categories and subcategories were brought back and tested against the material of each person. | Inclusion required that the patients could understand and express themselves verbally, had  experienced a stroke before the age of 65 and were cared for at a Swedish hospital during one particular year. | UC | Three main categories emerged, which the patients and the health care professionals shared: Category I, ‘‘A stroke hits people without any warning’’; Category II, ‘‘People who have had a stroke lose their normal functions’’; and Category III, ‘‘Physical training is the means to recover’’.  The goal for stroke patients was either to recapture their former social position or to adapt to another life situation. Rehabilitation must be based on interaction and negotiation between the patient and the health care professionals about realistic goals and relevant activities. | Health professional notes and interviews were both treated as one unit – for the purposes of only being interested in the patient view, the use of different techniques in the data collection is a methodological problem.
 | [NAME], [NAME] and [NAME].  Caring and uncaring experiences as narrated by persons with long-term pain after a stroke. [NAME]  2007. 21:41-7 | To describe how persons with long-term pain after a stroke experience their care. | Convenience sampling. | Open question interview. | The most information-rich narratives were selected for deeper investigation. The analysis was conducted inductively by means of qualitative content analysis. | Stroke patients suffering from long term (>6months) pain, 2 years after stroke. The participants had been diagnosed as having suffered cerebral infarcts or haemorrhages. All were able to independently take part in a conversation and none had any other major pain condition. | UC | Being listened to, believed in, given sufficient time and support and given information (including next of kin) are of importance for caring. This study also reveals the importance of accessibility and continuity for the participant’s confidence and well-being. Efforts in obtaining pain-relief based on professional knowledge have to do with the quality of care of patients with long-term pain. | The limitation of this study has to do with the persons excluded, i.e. persons not able to communicate and those with other major pain conditions whose experiences also ought to be considered.
 | [NAME], B. Lindstrom, [NAME] and [NAME].  Frustrated and invisible--younger stroke patients' experiences of the rehabilitation process. Disability & Rehabilitation. 2003. 25:867-74 | To describe and analyse how younger stroke patients had experienced rehabilitation and the time after stroke and to develop a hypothesis about their life situation. | Purposive sampling. | Thematised, in-depth interviews. | Grounded theory. Constant comparison. | Able to communicate. Approximately two years since stroke onset.  From the northern part of Sweden. | UC | Young stroke patients are frustrated and invisible due to the fact that the rehabilitation setting does not acknowledge the different needs of young stroke patients compared with older patients. | Results are based on a small sample.
 | [NAME], [NAME] and [NAME].  Stroke patients' experience with the Australian health system: a qualitative study. Canadian Journal of Occupational Therapy. 2009. 76:81-9 | To explore the experiences of community dwelling stroke survivors with the local health system. | Purposive, maximum variation sampling. | Semi-structured interviews at one, three, and five years after stroke. | Open coding, constant comparison, axial coding, iterative mapping of codes (concurrent with the process of constant comparison) and the identification of major categories and their relationships and interactions. | Admission to hospital, alive at discharge, and history and examination consistent with stroke as determined by a stroke physician. | Severe cognitive impairment (as determined by the Mini-Mental State Examination and inability to give informed consent), and current residence in a nursing home, that is, only community-dwelling stroke survivors (including hostels) were contacted. | The results support the need for community services that help maintain stroke survivors in the community and promote independence and occupational engagement. Participants in each cohort experienced concern regarding communication discrepancies. Similarly, it was apparent that community dwelling stroke survivors felt the need to access ongoing health services in order to maximise community participation and goal achievement, even many years after stroke. Poor knowledge about stroke was evidenced throughout the phases of care in this study. This is of concern with regards to timely and appropriate access to health services, especially at stroke onset. No differences between those at 1,3 or 5 years post stroke. | The use of a retrospective, observational cross-sectional design limits the ability to make interpretations regarding individuals’ changes in post-stroke functioning over time. Survivor bias and selection bias could have affected the findings. The fact that the study excluded people with more severe strokes, such as people in nursing homes, is a limitation to the external validity of the study. Results from this sample source may not readily transferable to the wider stroke population due to the impact of healthy volunteer bias and survivor bias.
 | M. Mangset,T.E. Dahl, [NAME] and [NAME].  'We're just sick people, nothing else': factors contributing to elderly stroke patients' satisfaction with rehabilitation. Clinical Rehabilitation.  2008. 22:825-35 | To identify factors influencing elderly stroke patients’ satisfaction with their rehabilitation following a stroke. | Purposive sampling. | Two semi-structured interviews per participant. | Analysis was performed in accordance with an approach described by Malterud, and was based on Giorgi’s phenomenological method. | First time stroke, age 60 years or older and ability to give informed consent. | Patients with severe speaking problems or cognitive impairment. | Being treated with respect and dignity is the core factor influencing elderly stroke patients’ perception of the quality of their rehabilitation process. Trivial daily care experiences influence patients’ satisfaction. A merely functional approach to stroke rehabilitation should be expanded into an approach that includes the patients’ perspective. | Participants were reluctant to give negative feedback about health services. Small sample size and inability to interview the most disabled stroke patients. Purposive sampling may have influenced findings. Interviewer monitored the stages of the analytical process.  The wide time window of interveiws (1–6 weeks for the first phase interview session) may have introduced biases and to some extent may have influenced the results. Patients were mainly concerned about the hospital part of the rehabilitation - could be due to question formulation.
 | [NAME] and [NAME].  Recreation in stroke rehabilitation part two: exploring patients' views... including commentary by [NAME].  2003. 10:456-462 | To discover whether inpatients on a stroke rehab ward in an acute hospital setting perceived a need for recreational activity during their rehab following stroke. | Purposive sampling. | Interviews using open ended questions. | Grounded theory. Constant comparison. | Patient has suffered a stroke and this was primary reason for current admission. Need to have been inpatient on stroke rehab ward for 2 weeks. | Aphasia. | The experience of hospital rehabilitation could be improved. An environment that integrates therapy and recreation encouraged and supported by all members of staff would be appropriate. The focus should be on augmenting current therapies rather than simply adding further activity. | Small scale study conducted in one setting.
 | [NAME], [NAME], [NAME] and [NAME].  'After the stroke': Patients' and carers' experiences of healthcare after stroke in Scotland. Health and Social Care in the Community.  2010. 18:424-432 | To explore the individual’s perceptions and views of lived experiences of a specific phenomena, namely the healthcare system and services received after stroke. | Purposive sampling. | Semi-structured interviews. | Interpretative Phenomenological Analysis (IPA) | Patients and carers who had attended an outpatient clinic for more than 6 months. | Patients with severe communication difficulties were excluded, but in recognition of this, some of the carers approached and included in the study looked after relatives with marked communication difficulties. | An overarching theme of ‘After the stroke’ was identified and  six sub-themes: (1) ‘What is wrong?’; (2)’Help came quickly’; (3) ‘Something is still wrong’; (4) ‘In the hospital’; (5)’I’m taking them home’; (6) ‘Back at home’.  The results indicated a failure to meet some of the current stroke guideline recommendations. These valuable results highlight the complexity of delivering evidence-based stroke services to meet the needs of both healthcare providers and recipients of the service. | The results emerged from data gathered from a primary study exploring an FES clinic. This may have impacted on the depth of data gathered. Represents a small sample of patients after stroke  from one health board, they do not necessarily represent a diverse stroke population. On average, patients were 4.63 ± 1.93 years post stroke, this may have influenced their ability to recall in detail their experiences after stroke.  All participants still had annual access to the FES clinic, which may have affected their perceptions of community based services.
 | [NAME], [NAME] and [NAME].  The provision of health information to stroke patients within an acute hospital setting: what actually happens and how do patients feel about it?. Topics in Stroke Rehabilitation.  2006. 13:78-98 | 1. (i) To describe how much health information is provided to patients in the acute stroke unit. (ii) To determine whether patients with aphasia receive less health information than patients without aphasia. 2. (i) To describe patients’ perceptions of and satisfaction with the provision of health information. (ii) To determine whether the perceptions of health information of patients with aphasia are different from patients without aphasia. 3. (i) To describe patients’ knowledge of stroke on discharge from the acute stroke unit. (ii) To determine whether patients with [NAME] report less knowledge of stroke. | UC | Participant observation and qualitative semi-structured interviews. | Time recordings for each observation, topics of health information were categorized and counted,  qualitative analysis of the descriptions of communicative interactions (a form of thematic analysis) | Medical diagnosis of CVA or TIA, Participants also required a medical and cognitive status conducive to providing informed written consent. Participants with aphasia (Group A) were required to have reliable yes/no responses. | Unable to give consent, no diagnosis of CVA or TIA. | Three major themes emerged regarding the nature of health information provision to stroke patients within the acute stroke unit: 1)the variability in the quality of health information provided to stroke patients; 2) how the frequency of health information exchanges was affected by participants’ role, participants’ characteristics, health professional characteristics, and environmental characteristics; and 3) how the frequency and quality of health information provided was affected by the presence of transmission barriers. Patients with aphasia received less information compared to stroke patients without aphasia.  The informational needs expressed by participants may indeed reflect a lack of health information provision rather than patients forgetting that health information was given. | Small sample size, perhaps not generalisable. A greater number of participants with aphasia, more evenly matched groups the inclusion of a nonstroke population would have been beneficial. Possibility of observer effects (the Hawthorn effect) biasing results.
 | [NAME], I. Holmstrom and D. Kjeldmand.  Stroke patients' delay of emergency treatment. Scandinavian Journal of Caring Sciences.  2010. 24:307-311 | To explore the meaning of stroke symptoms and treatment to patients who delayed hospital arrival for more than 24 hours. | Convenience sampling. | Two interviews. | Empirical Phenomenological Psychological method (EPP). | Delayed arrival to hospital for 24 hours; neurological symptoms evident; ability to require treatment; absence of neglect symptoms. | UC | Health care information about how to act in cases of early stroke symptoms may need to imbue people with an understanding of how early treatment of neurological symptoms and preserved control of life are intimately connected. Furthermore emergency care of acute stroke patients might need to take place in an organisation where patients are sure to be met by physicians as a person by a person. | Small sample - case study.
 | [NAME], C. Dow, J.D. Calabrese, L. Locock, [NAME]. Stroke survivors' experiences of the fundamentals of care: A qualitative analysis. | 1. Do people who have survived the acute stage of stoke talk about fundamentals of care? 2. If so, how do they talk about them? 3. What fundamentals of cares are most frequently described? 4. What sort of language is used? 5. How do stroke survivors talk about their experiences with staff? 6. Does the Fundamentals of Care Template  adequately reflect what stroke survivors describe as the fundamentals of care? | Purposive sampling. | Narrative and semi-structured interviewing. | Secondary analysis -  data re-analysed using a Template which encapsulates the fundamentals of care as defined by nursing professionals, followed by thematic analysis. | UC | UC | Survivors of strokes have vivid and often distressing recollections of their experiences of the fundamentals of care. For every description of a physical need (elimination, eating and drinking, personal hygiene) there where lucid accounts of the psychosocial and emotional impact (humiliation, distress, lack of dignity, recovery, confidence). Linked to the somatic and emotional dimensions were narratives around the relationship between the patient and the carer (nurse, doctor, allied health professional). Positive recollections of the fundamentals of care were less evident than more distressing experiences. | Secondary analysis. Results not generalizable to all stroke patients. Sample size small so some issues may be missed. Possibility of some issues being difficult for participants to discuss so not mentioned.
Return to work / retirement | [NAME], [NAME] and [NAME].  Stroke patients' experiences of return to work. Disability & Rehabilitation. 2006. 28:1051-60 | To gain knowledge and understanding about how young stroke survivors experience their return to work process. | Convenience sampling. | Open-ended interview. | Analysed using empirical phenomenology. This implies an analysis in several steps: the reading of interviews, division into meaning units, transformation, synthesis and general structure. | The study population comprised the base populations in 2001 aged 30 – 65 years at one stroke clinic at Linko ping University Hospital and one stroke clinic at a county hospital in Norrk ping,  Inclusion - age (30 – 65), first-ever stroke in 2001, being part of the study population, working at the time of their stroke, being able to speak Swedish, and having the cognitive ability to take part in a face-to-face interview.  All had participated in a case control study comprising all stroke patients in this age group, both employed and non-employed, at these two hospitals, and aimed at exploring possible associations between work-related stress, organizational change and risk of stroke among people aged 30 – 65. | UC | Return to work was a process that comprised a step-by-step return over a long period of time. The informants reported lack of information about the cognitive deficits they subsequently suffered from after their stroke. The rehabilitation was not age-adapted and it was insufficient for their needs. The individual’s possibility  to return to work was perceived as enhanced by  self-efficacy in combination with external support. | Caution is required in generalizing these results to other stroke survivors.
 | [NAME], [NAME] and [NAME].  The experience of stroke for men in retirement transition. Qualitative Health Research.  2005. 15:1022-1036 | To explore how men manage when two significant life events, stroke and retirement, occur within a close time proximity. | Purposive sampling. | Semi-structured interviews. | Interpretive phenomenological analysis (IPA). | Men of retirement age; retiring at time of stroke; 6 months post-stroke; cognitively able, have spouse or partner. | UC | The themes suggested that significant interplay existed between the meanings made of the two life events. The emergent themes implied that stroke had a profound impact on the men’s lives and affected them on a number of levels. The experience of suffering a stroke also led to some positive reframing of life. | Specific and small group.
 | [NAME], [NAME]. Identity continuity in the face of biographical disruption: 'It's the same me'. [NAME]. 2012. 13: 203-211 | 1. Do younger stroke survivors perceive a change in identity post-stroke, and if so, what meaning do they give this experience? 2. What factors are perceived to have influenced identity re-establishment? 3. What are the experiences of identity reestablishment and returning to employment for young survivors of stroke? | Purposive sampling. | Semi-structured interviews. | Thematic analysis. | (1) aged between 21 and 55 years; (2) experienced stroke 1–10 years ago; (3) returned to paid employment within 10 years of stroke, although it was not necessary to have sustained employment; and (4) expressed an ability and willingness to reflect on post-stroke experience, including identity and return to work. | UC | Participants actively pursued identity continuity while managing biographical disruption. Resumption of life roles and responsibilities were important for identity re-establishment, but fraught, particularly the return to work. The findings suggest that psychosocial rehabilitation could play a greater role in supporting survivors’ resumption of valued life roles, including return to work. | Specifically involved younger, higher functioning stroke patients. All were women who were reasonably well supported during the return to work process.  The study does not capture the experiences of males, those with lasting aphasia, or those who encounter significantly adverse experiences with regards return to employment. Limited information on diagnosis and impairments at time of stroke.
 | [NAME], [NAME], [NAME]. Critical factors related to return to work after stroke: a qualitative study. Topics in Stroke Rehabilitation. 2011. 18: 341-351 | To describe the facilitators and barriers that stroke survivors encounter in their efforts to return to work after stroke. | Purposive sampling. | Semi-structured interviews. | Modified grounded theory analysis. | A minimum of 3 months post stroke, 18 years or older, having returned to work or with intention to. | Anything more than mild-moderate cognitive and communication deficits as measured by the National Institutes of Health Stroke Scale or FIM cognition and communication items assessed at the time of consent. | Seven themes were identified in an analysis of interview transcripts: financial, impairments as barriers, interpersonal support, therapy supporting RTW, organizational influences, work/job specifi c issues, and psychological issues. These themes confirm and expand on existing qualitative data that focus on survivors’ perceptions of their work potential and efforts by emphasizing the need to focus beyond the survivors and their work to include other people and organizations to facilitate the RTW process. | Generalization of the current findings is limited by the small sample and qualitative nature of analysis, which could have introduced bias or limited the range of factors indentified.
Nursing home experience | [NAME], [NAME], [NAME], [NAME] and [NAME].  Patient autonomy during rehabilitation: the experiences of stroke patients in nursing homes. International Journal of Nursing Studies.  2000. 37:267-276 | To determine which facilitating or constraining factors regarding patient autonomy during rehabilitation are identified by stroke patients in rehabilitation wards in nursing homes. | Convenience sampling. | Interviews and field notes, on admission,  during rehabilitation, and at discharge. | Grounded theory. Constant comparison. | Consecutive patients with a confirmed diagnosis of stroke who were admitted to one of the rehabilitation wards participating in the study were included if they were able to communicate, if they were Dutch and spoke their mother tongue, if the rehabilitation goal was to return to their own home or an old people's home, and if participating in the study was not a heavy burden for the patient. | Severe multi-morbidity (somatic, psychiatric and/or psycho-geriatric) which would interfere with participation in the study. Participation was contingent on informed consent. | This study indicated that the stroke patient's autonomy  (dimensions: self determination, independence and self care) increases during rehabilitation due to patient factors (conditions and strategies of the patient) and environmental factors (nursing home and strategies of health professionals and family). Health professionals should be attentive to the stroke patient's actual autonomy (self-determination, independence and self-care) and avoid paternalism regarding  aspects other  than treatment. | UC
 | [NAME], [NAME], [NAME], [NAME] and [NAME].  Facilitating and Constraining Factors on Autonomy. Clinical Nursing Research.  2000. 9:460-478 | Seeks to pinpoint which dimensions of autonomy are identified by stroke patients rehabilitating in nursing homes and to determine which factors, in the stroke patients’ perception, facilitate or constrain patient autonomy on admission. | Convenience sampling | Interviews: 21 interviews on admission, 17 interviews during rehabilitation, and 20 interviews at discharge. | Constant comparative method as described in grounded theory (Strauss & Corbin, 1990). | Patients with a confirmed diagnosis of stroke who were admitted to one of the rehabilitation wards participating in this study were included if they were able to communicate (opinion of speech therapist, patients with aphasia were not excluded on principle), if they were Dutch and spoke their mother tongue, if the rehabilitation goal was to return to their own home or an elderly care facility, and if the selector(s) took the view that participating in the study was not a heavy burden for the patient. | Patients were excluded if they had severe multimorbidity (somatic, psychiatric, [NAME]), which would interfere with study participation. | Identifies three dimensions of autonomy: self-determination, independence, and self-care. Patient and environmental factors influencing patient autonomy on admission were found. On admission, the development of patient autonomy heavily depends on the environment, which entails that facilitating environmental factors should be maintained and constraining environmental factors should be changed or minimized. Regarding the health professionals’ strategies, support and supervision are to be provided, balanced, and tailor made, which requires attentiveness. Health professionals should give patients more information regarding the methods used. | Some interviews took place more than 4 weeks after admission. It is questionable whether these patients’ answers concerned the situation on admission.
 | [NAME], [NAME], [NAME] and [NAME].  Supporting stroke patients' autonomy during rehabilitation. Nursing Ethics.  2007. 14:229-41 | To explore stroke patients’ experiences of health professionals’ approach towards autonomy in a longitudinal way. | Convenience sampling. | Open-ended interviews. | Constant comparative method described by [NAME] and [NAME]. | Consecutive patients with a confirmed diagnosis of stroke who were admitted to one of the rehabilitation wards participating in this study were included if they were able to communicate (opinion of a speech therapist; patients with aphasia were not excluded on principle), if they were Dutch and spoke their mother tongue, if the rehabilitation goal was to return to their own home or an elderly persons’ care facility, and if the selector(s) took the view that participating in the study was not a heavy burden for the patient. | Patients were excluded if they had severe multimorbidity (somatic, psychiatric and/or psychogeriatric) that would interfere with their participation. | Health professionals should tailor their interventions to stroke patients’ changing autonomy. Multidisciplinary guidelines could sustain health professionals in this. In the rehabilitation phase, patients are able to decide for themselves, except regarding treatment and rehabilitation procedures. Leaving room for patients to plan and decide on their own stimulates autonomy. Step by step shared decision making with regard to treatment becomes possible. If health professionals continue to decide for patients, patients may be less prepared for autonomous living after discharge. Giving information (including progress evaluation) and discussion is a prerequisite for patients’ active participation in rehabilitation and in shared decision making. | Cannot be used to answer quantitative questions, for example testing causal relationships. This study was limited to interviews. No observations were made to verify if, for example, the constraining and facilitating factors discussed by the patients were really at stake.
Coping Strategies | [NAME], [NAME] and [NAME].  Risk, Uncertainty and Life Threatening Trauma: Analysing Stroke Survivor's Accounts of Life after Stroke. Forum: Qualitative Social Research. 2006. 7 | To investigate the impact of stroke on the lives of survivors, the coping strategies they developed and the effectiveness of professional support. | Purposive sampling. | Focus group and individual interviews. | The research team analysed the content of the interviews and diaries thematically using constant comparison based on Grounded Theory. | Stroke survivors. | UC | The stroke undermined ontological security and increased awareness of and anxiety about everyday activities both in and outside the home, created awareness of a new danger, that of having another potentially fatal stroke, and could damage social standing. Survivors used a variety of strategies to manage such uncertainties. They shortened their time horizons, either abandoning longer-term plans or discussing them in very vague and general terms. They concentrated either on the present, "taking each day as it comes" or developed goals to structure the short-term future. These short-term goals involved challenges and there was in some cases the possibility of a harmful outcome. | Also invited stroke survivors to complete diaries recording the ways in which they managed day-to-day life. This part of the project was less successful as for a variety of reasons only four participants completed diaries.
 | [NAME], [NAME] and [NAME].  [NAME] with long-term pain after a stroke. Journal of Pain and Symptom Management. 2004. 27:215-225 | To describe pain, coping strategies, and experienced outcomes of coping with the three previously classified long-term pain conditions after a stroke. | Convenience sampling. | Two interviews per participant  held two years after stroke. | Latent content analysis. | On the inpatient register at a neurological clinic in a university hospital in Sweden, consisting of those diagnosed with cerebral infarct or haemorrhage. | Patients with other pain conditions and those who were not independently able to take part in a conversation. | Persons with pain after a stroke should not be treated as a homogeneous group. Living with long-term pain requires coping strategies to the specific type of pain experienced and the problems related to it. | The results of this study cannot be generalized to a stroke population suffering from long-term pain due to the exclusion criteria and qualitative nature of the study.
 | [NAME], D. S.-C. Tribble, J. Desrosiers, [NAME] and A. Bourget.  Adaptation and coping following a first stroke: a qualitative analysis of a phenomenological orientation. International Journal of Rehabilitation Research.  2006. 29:247-249 | To improve our understanding of the adaptation process, including primary appraisal (what meaning is given to the situation) and coping strategies (how the situation is dealt with), from the crisis period to 6months post-stroke, in individuals admitted to an acute care hospital for a first episode. | Purposive sampling. | Interviews 2-3 weeks after stroke then 3 and 6 months later. | Exhaustive coding was applied; specifically, putting a label to a word, a phrase or a paragraph to identify a specific meaning. These labels, or codes, formed a codification grid which evolved throughout the coding process. Codes were then grouped under categories covering specific meanings. This final version, the classification grid, was made up of the essential themes that emerged from the participants’ interviews. | The sample was composed of 10 individuals admitted to an acute care hospital for a first stroke. Participants were recruited during the first 2 weeks after their stroke. | UC | Appraisal and coping strategies are shown to be interrelated in a complex fashion. The fear of another stroke is particularly overwhelming, especially in the initial period post-stroke, and serves as a source of motivation for active compensation coping strategies, such as adopting healthy behaviours. Effective coping post-stroke, potentially leading to an optimal quality of life, is mainly characterized by a process of multiple comparisons, enabling a reset of one’s expectations in order to bring them more into line with the new reality. Appropriate and individualized information about stroke, and how to potentially prevent another stroke, should be an integral part of the rehabilitation process. | UC
 | [NAME], [NAME] and [NAME].  Managing an everyday life of uncertainty--a qualitative study of coping in persons with mild stroke. Disability & Rehabilitation.  2009. 31:773-82 | To investigate from the actor’s perspective how and why persons with mild stroke coped with their new life situation as they did during the first year after stroke. | Purposive sampling. | Interviews with open questions. | Inspired by the grounded theory method ([NAME] and [NAME]). | Diagnosis of Asthen Emotional  syndrome,  no or as few other stroke related impairments as possible, diversity in age and a diversity of vocational/occupational situations. | Participants with other intervening illnesses and diagnoses were excluded, as were participants with aphasia and cognitive impairment on a level where interpretation of the interview data was not considered valid. | The respondents experienced a complex coping situation. The core category of ‘striving to manage an everyday life of uncertainty’ emerged, connecting and covering the experiences of the respondents’ coping efforts. Despite appearing to have recovered from their stroke after 1 year, they still had to cope with persisting cognitive and emotional dysfunctions that made it difficult to participate in life situations. The core category was built up of three descriptive categories: (1) individual concerns of coping, (2) relational concerns of coping and (3) environmental conditions for coping. | Data were collected in one interview.  The respondents in this study have a median age of 52 years, are all cohabitant with a partner and all suffered a mild stroke and are therefore not representative of the stroke population in general. The respondents were given the opportunity to speak freely of issues they chose themselves. This could have had the consequence that the depth of the answers to each question could have suffered.
 | [NAME], [NAME] and [NAME].  [NAME] with stroke: psychological and social dimensions in U.S. patients. International Journal of Psychiatric Nursing Research. 2007. 12:1474-87 | To investigate how patients in the US perceived their stroke experiences by examining coping strategies and hopes for recovery. In addition, factors that inspired hope during recovery were identified. | UC | Interviews. | Coded using a priori codes previously identified in a pilot study of stroke patients. A coding manual was developed, including category and subcategory codes with definitions and examples of each code. | Diagnosis of embolic or ischaemic stroke, hospitalized. | UC | Stroke patients believe hope is important for recovery. Hopes focussed on becoming medically stable, recovering, regaining independence, and returning to prestroke activities. Hopes are derived from family/friends, spiritual beliefs / practices, positive attitudes, seeing recovery, being independent and from interactions with staff. The goals of rehabilitation encompassed the patients sources of hope. | Findings cannot be generalized outside US.
 | [NAME], [NAME] and [NAME].  [NAME] for recovery after stroke: a perspective based on personal experience. Disability & Rehabilitation.  2008. 30:507-516 | To learn more about individual beliefs and personal strategies used to support the period of recovery after stroke. | Purposive sampling. | Two in-depth interviews with each participant. | Phenomenological approach for content analysis. | UC | Severe memory and language impairments. | All individuals identified a number of specific factors which had supported or hindered their own recovery. There were a diversity of both internal/personal and external factors which may not be surprising, given the complexity of stroke, but all participants stressed the importance of both factors. | Findings relate to a specific group and are not generalisable.
Living with aphasia | [NAME], [NAME], [NAME], [NAME] and [NAME].  Understanding the meaning of rehabilitation to an aphasic patient through phenomenological analysis – a case study. International Journal of Qualitative Studies on Health and Well-being.  2007. 2:93-100 | To explore what rehabilitation means to an aphasic stroke patient. | [NAME], case-study approach. | The informant was interviewed twice. | Empirical, Phenomenological and Psychological method (EPP) allowing for interpretation. | Case study of one aphasic patient. | UC | The patient had a well definable loss of his language. Hence, he could act autonomously in the spatial world. Yet his body’s tool for access to the world of human relations was damaged. This very well defined loss turned the focus of the meaning of the rehabilitation to a simplification: repairing the language. The needs of aphasic patients should be taken into account when planning rehab. | In the interviews and in the reading of the written text many single words and many passages were ambiguous. Therefore, misunderstandings occurred and the richness of the studied data could not be used to the same extent had the informant been able to communicate normally.
 | [NAME], [NAME], [NAME] and [NAME].  Snapshots of success: An insider perspective on living successfully with aphasia. Aphasiology.  2010. 24:1267-1295 | To explore, from the perspectives of people with [NAME], the meaning of living successfully with aphasia. | Maximum variation purposive sampling. | (1) semi-structured in-depth interviews and (2) participant-generated photography (with photographs taken forming the basis of a second interview). | Interpretative phenomenological analysis (IPA). [NAME] discussed and became part of text. | Chronic aphasia as a result of stroke. Tested on Western Aphasia Battery and those above cut-off included. | Dementia or cognitive impairment; uncorrected visual or hearing impairments | The concept of living successfully with aphasia is complex, and highly individualised. Four core themes related to living successfully with aphasia emerged from the data: doing things; meaningful relationships; striving for a positive way of life; and communication. | UC
 | [NAME], [NAME], [NAME], [NAME], [NAME], [NAME] and [NAME].  What people with [NAME] want: Their goals according to the ICF. Aphasiology.  2011. 25:309-322 | The primary aim of this study was to gain an understanding of what people with [NAME] want from aphasia services, and to code their goals according to the WHO International Classification of Functioning, Disability and Health  (ICF). | Maximum variation purposive sampling. | In-depth interviewing. | Qualitative content analysis, goals of a 30% consecutive subsample were coded using the ICF. | Aphasia, post-stroke; ability to communicate for interview. | Severe impairment. | The rehabilitation experiences of participants with aphasia described nine broad categories of goals post-stroke. The priorities of return to pre-stroke life, communication, and physical function and health might be expected in the aftermath of stroke but the broader life goals in the areas of social life, work, and leisure, as well as altruism are not so well recognised in rehabilitation. The need for information about aphasia and stroke was also emphasised by participants in this study. Goals could be linked to all ICF components within the ICF, with the majority linked to Activities and Participation. | Intercoder reliability at the first and second levels of the ICF did not reach an acceptable level.
 | M.B.Johansson, [NAME], [NAME]. Communication difficulties and the use of communication strategies: from the perspective of individuals with aphasia.  International Journal of Language and Communication Disorders. 2012. 47: 144-155 | To explore how people with aphasia experience conversations with different people and how they handle communication difficulties in everyday life.  A secondary aim is to study how they perceive their own and their partners' use of communication strategies. | Purposive sampling. | Semi-structured interviews and field notes. | Content analysis. | Participants with aphasia due to a stroke, occurred at least 12 months before interview.  Older than 17 years, living at home, with a significant other that they communicate with regularly. Use Swedish as their everyday language. | Other speech or language difficulties (such as severe dysarthria). Alcohol or drug abuse problem, dementia, other significant cognitive dysfunction, or significant hearing or vision impairments (as determined by the recruiting speech-language pathologist). | Informants appreciated having conversations despite the fact that they perceived their aphasia as a serious hindrance. Different factors related to the informants, the conversation partners, the conversation itself and the physical environment were perceived to impact on conversations. The importance of the communication partners’ knowledge and understanding of aphasia and their use of supporting conversation strategies were acknowledged by the informants. The informants’ views on using communication aid devices or strategies varied considerably. Four themes that characterized the informants’ narratives were: loss and frustration, fear and uncertainty, shared responsibility based on knowledge, and longing for the past or moving forward. | Difficulties in gaining reliable, rich data from interviews with aphasic patients, risk of preconceptions of experienced researcher influencing analysis.
 | [NAME], [NAME], [NAME].  The first 3 months post-stroke: What facilitates successfully living with aphasia? International Journal of Speech and Language Pathology. 2012. 14: 390-400 | To explore the perspective of people with aphasia on factors that facilitate successful living during the first 3 months post-onset. | Convenience sampling. | Semi-structured interviews. | Thematic analysis. | Diagnosis of aphasia as a result of stroke within the past 3 months, 18 years or older, the ability to participate in an interview (with communication supports if necessary). | Concomitant cognitive disorders such as dementia. | A number of themes were identified from the interviews, including: a need to do things in order to be actively engaged in rehabilitation; increase independence and have a purpose in life; the importance of social support; the value of rehabilitation; a need to adapt and make adjustments; and having a positive outlook. These results suggest that a range of service delivery models need to be considered during the early stages post-stroke in order to address individual needs and so that long-term outcomes of people with [NAME] may be improved. | Treating clinicians acted as gate-keepers for recruitment, it is not known to the researchers whether all participants meeting the inclusionary criteria for the study were approached and exact reasons for participants not consenting to be contacted. Difficult to know if this sample is truly representative of a wide range of experiences during the early stages post-stroke.
Physiotherapy / exercise | [NAME], [NAME], [NAME] and [NAME].  Stroke rehabilitation -  comparing hospital and home based physiotherapy: the patient's perception. New Zealand Journal of Physiotherapy  2003. 31:84-92 | To explore participants perceptions of outpatient hospital and home based physiotherapy. | Convenience sampling. | In depth interviews. | Phenomenographic methodology . Common themes identified, grouped into categories and coded. Conceptual framework constructed. | Recruited from rehab department 1) a primary diagnosis of stroke 2) receiving outpatient physio 3) residing at home. | UC | Neither a hospital or home based setting alone appeared optimal for patients, both settings had advantages and disadvantages. Both options should be discussed and made available to patients. Patients need to be supported in the transition from inpatient to outpatient rehabliltation. | Other population groups such as different cultural groups and rurally based groups need to be investigated.
 | [NAME], L. Plue, [NAME], A. Schmid and [NAME].  Barriers and facilitators to exercise among stroke survivors. Rehabilitation Nursing.  2007. 32:253-60, 262 | To elicit barriers to and facilitators of exercise after stroke. | UC | Focus group sessions. | UC | Adults who had experienced a diagnosis of stroke or TIA and received care at a local community, county or veteran hospital during the past year. | UC | Participants across the group reported three barriers and three facilitators to exercise after stroke. Exercise activity can provide a purpose and structure to a stroke survivor’s daily schedule, which may be interrupted after stroke. In addition, receiving social support from peers and providers, as well as offering stroke-specific exercise programming, may enhance physical activity of stroke survivors including those with disabilities. | UC
 | [NAME], [NAME]. A study of perceived factors affecting patients' participation in outpatient stroke physiotherapy exercise in Nigeria. International Journal of Therapy and Rehabilitation. 2012. 19: 581-590 | To explore the factors that were perceived to affect people with stroke in Nigeria in participating in their physiotherapy exercise. | Convenience sampling. | Semi structured interviews and field notes. | Thematic analysis. | Stroke patient attending a physiotherapy outpatient department. | Cognitive difficulties, not able to speak English, attending the outpatient clinic from the wards. | The factors that were perceived to affect the participants' participation in their outpatient physiotherapy sessions encompassed three dimensions: the internal and personal, the relational and experiential and external factors. These dimensions were interconnected with the internal and personal factors being central to the participants' participation. | Small scale study involving relatively young, affluent male patients who can speak English and attend a specific outpatient department, so findings cannot be generalised to the wider population. Revisiting participants to verify findings was not possible due to time constraints. The final part of one of the interviews did not record and was documented from memory. Researcher's background knowledge and interest may have biased interpretation.
Motivation / hope in recovery | [NAME], [NAME], [NAME] and [NAME].  Qualitative analysis of stroke patients' motivation for rehabilitation. British Medical Journal. 2000. 321:1051-1054 | To explore the beliefs of stroke patients who were identified as having “high” or “low” motivation for rehabilitation and investigated the determinants of their motivation. | Purposive sampling. | Semi structured interviews. | Interviews were analysed by content, transcripts were read for emergent themes, which were then coded, codes were then compared with those in each other interview to create broader categories that linked codes across interviews (constant comparison). | Stroke patients on the stroke unit considered to have high or low motivation. | Patients with severe cognitive or language  difficulties or medical conditions held to affect  engagement with rehabilitation (for example, depression). | There are some differences in beliefs between stroke patients identified as having low or high motivation for rehabilitation. Patients with stroke identified as having high motivation for rehabilitation were found to align themselves more closely to the aims and methods of rehabilitation professionals. These beliefs seem to be influenced by the environment in which the patient is rehabilitated. Professionals and carers should be made aware of the ways in which their behaviour can positively and negatively affect motivation. | Excluded patients with severe linguistic or cognitive impairments and patients diagnosed with disorders that we considered would affect motivation. Patients were labelled as high or low motivation by  health professionals not themselves.
 | A. Cross and [NAME].  A preliminary qualitative analysis of the impact of hope on stroke recovery in women. Topics in Stroke Rehabilitation.  2010. 17:484-495 | To determine what factors influence hope in the later stages of recovery. | Purposive sampling. | Semi-structured interviews. | Phenomenology. | 60 years and over; women; 6months post stroke. | UC | These women described  hope as an integral factor in fostering optimal recovery beyond 1 year post stroke. 3 interconnected factors (ie external, internal, and personal) worked in conjunction to foster hope in these women post stroke. | Participants in this study had a variety of impairments as a result of their strokes.  Some participants were 11-13 years post stroke and their recall of the events may not have been as accurate. Two participants were left with expressive aphasia, which limited their ability to discuss their experiences. Some participants suffered from other comorbidities, and it was not always clear whether their feelings, thoughts, and reflections were of their stroke specifically or a combination of their stroke and these other illnesses.
Reintegration into the patient's lifeworld and community | [NAME], D. M. Connelly and [NAME].  'Getting back to real living': a qualitative study of the process of community reintegration after stroke. Clinical Rehabilitation. 2010. 24:1045-1056 | To examine the process of  community reintegration over the first year post stroke from the patient’s perspective. | Purposive sampling from trial participants. | Semi-structured interviews on five occasions - in the hospital (pre discharge) and at two weeks, three months, six months and one year post stroke rehabilitation. | Guided by methods described by [NAME] and [NAME], open, axial and selective coding were used. | Participants had sustained their first major unilateral hemispheric stroke, were English speaking, scored 24 points on the Mini-Mental State Examination,25 were discharged home and had adequate verbal communication (i.e. without evidence of receptive or expressive aphasia). | Patients discharged to long-term care and those who reported serious comorbidities or unstable medical conditions were excluded. | This study exposed the progression of goals that community-dwelling stroke survivors aimed to achieve during the first year post discharge from inpatient rehabilitation. The expectations set by the stroke survivor themselves are most important to community reintegration....an important goal for stroke rehabilitation is to engage formal and informal caregivers in facilitating realistic and achievable goal setting. The transition to the community poses a substantial challenge for stroke survivors due to reduced sources of self efficacy and fewer opportunities to develop confidence for community living. | The cohort examined was a subcohort of a large randomized control trial, restricting the transferability of the results. Participants were also higher functioning and younger compared with the reported demographics of the stroke population.
 | [NAME] and [NAME].  The meaning of occupational gaps in everyday life in the first year after stroke. OTJR Occupation, Participation and Health.  2010. 30:184-192 | To explore the phenomenon of occupational gaps in the lived experience of performing everyday occupations during the first year after stroke. | Purposive sampling. | Four interviews. | Empirical, Phenomenological and Psychological method (EPP). | First stroke less than 1 month earlier; 20-65 years; limitations in performance of daily activities. | UC | Five main characteristics were identified: 1. encountering occupational gaps in formerly taken-for-granted activities; 2. striving to narrow gaps in desired occupations; 3. recognizing oneself in doing; 4, searching for a new sense of self through doing; and 5. creating strategies to enable doing. The findings show the importance of being able to preserve some sense of self in everyday doings after a life course disruption caused by stroke. | Small sample size, data collection over a limited time period.
 | [NAME] and [NAME].  Waiting to get better: a dilemma regarding habits in daily occupations after stroke. American Journal of Occupational Therapy.  2005. 59:218-224 | To explore and gain an understanding of how habits are experienced when performing daily occupations after a stroke. | UC | Open ended questions, structured interview. | Constant comparative analysis - grounded theory. | Clients at rehab unit having some difficulty performing activities after stroke. | Aphasia; severe cognitive problems. | The findings show that the participants experienced frustration when performing daily occupations because changes in their performance meant that former habits could not automatically be re-established; daily occupations had to be re-organized and planned with greater deliberation than had been required prior to the stroke. In re-establishing their daily occupations, the participants experienced an ongoing conflict about whether or not to develop new habits. . This dilemma led to a sensation of waiting: waiting to get better, waiting for another solution and waiting for the treatment to make an impact. As a result, few new habits were established in daily occupations. | Focuses on early stage of recovery -longitudinal data needed.
 | [NAME].  Impact of the environment on role performance in older stroke survivors living at home. International Journal of Therapy & Rehabilitation.  2004. 11:567-573 | Examines the experiences of older stroke survivors. The purpose of this study was to examine the person-environment fit as it intersected with role performance in older people with stroke living at home. | Purposive sampling. | Interviews. | Grounded theory analysis. | English speaking; stroke diagnosis; 50 years and over; normal mini mental. | UC | Stroke survivors manage their lives as they carry out their old and new roles. Their lack of control and independence makes them vulnerable as they strive to maintain some sense of dignity and autonomy. Life is worth living after a stroke and many stroke survivors had a positive outlook. | The findings can only be generalised to the group interviewed. Most participants were white and were married with a spouse at home.
 | [NAME], K. Astrom, [NAME]. On parallel tracks: newly home from hospital - people with stroke describe their expectations. Disability & Rehabilitation.  2012. 34: 1218-1224 | To investigate how stroke survivors describe their expectations regarding how life would appear when coming home, and how these expectations were met on discharge from the rehabilitation clinic and during their first 3 months at home. | Purposive sampling. | Semi- structured interviews. | Content analysis. | Stroke in-patient on the rehabilitation wards, able to convey experience and interested in participation. | Severe aphasia and dementia. | On discharge from the rehabilitation clinic, the informants described experience of being at a dividing line between the safety of the ward and the unknown at home. Expectations for improvement were high. A few weeks later, they described being on parallel tracks in life, waiting for improvement  and adjusting to life at home. Three months after discharge, they were still waiting for improvement and had begun to realize that life might never be the same as before the stroke. | Limited generalizability, few informants although multiple interviews with each, informants younger than the average stroke population.
 | [NAME], [NAME], [NAME]. Holistic concerns of Chinese stroke survivors during hospitalization and in transition to home. Journal of Advanced Nursing. 2011. 67:2394-2405 | To explore the phenomenon of concerns as experienced by Chinese stroke survivors during hospitalization and in transition to home. | Purposive sampling. | In-depth interviews. | Thematic analysis. | Chinese, age over 18 years, first stroke, Mini-Mental State Examination score 21 or over, able to communicate, no debilitating co-morbidity, discharged home. | Transient Ischaemic Attack or co-existing mental disorders. | Stroke survivors’ physical, psychological, socio-cultural and spiritual concerns in hospital and transition to home emerged from the data analysis. The four major themes identified were: (a) dynamic interplay of holistic concerns, (b) cultural expression of illness experiences, (c) social support ‘paradox’ and (d) caring gaps in clinical management. | The research was conducted in one general hospital in Hong Kong with a small sample size. Most of the informants tended to be less educated and aged. The findings may not be transferable to others clients with higher education and at a younger age group. The interviews were conducted at 1-week post discharge by asking the informants to talk about the stroke experiences retrospectively. There may be recall bias.
 | K. Sumathipala, [NAME], [NAME], C.D.A. Wolfe, [NAME]. Identifying the long-term needs of stroke survivors using the International Classification of Functioning, Disability and Health. Chronic illness. 2011. 8:31-44 | To investigate how contextual factors, as described by the ICF, impact on stroke survivors' functioning and how needs are perceived in the long term after stroke. | Purposive sampling. | Semi-structured in-depth interviews. | Thematic analysis drawing on the ICF framework. | Stroke at least 12 months prior to study. | UC | Long-term needs related to activities of daily living, social participation, mobility aids, home adaptations, housing, financial support, rehabilitation, information and transport. Participants identified a range of ICF environmental and personal factors including ‘support and relationships,’ ‘products and technology,’ ‘services, systems and policies,’ ‘attitudes,’ life experiences, social position and personal attitudes. Interactions between these contextual factors shaped functioning and how long-term needs were perceived. Social support from family and friends was a key facilitator of functioning for most participants, buffering the impact of disabilities and mediating perceived needs. Needs were not always stroke specific as many participants experienced other health problems. | Using interviews as a method may provide one off in-depth accounts of long -term needs.
 | [NAME], [NAME]. An ecological approach to activity after stroke: It takes a community. Topics in Stroke rehabilitation. 2011. 18: 509-524. | To present issues surrounding stroke survivors' lack of community engagement in the context of a socio-ecological model. | Purposive sampling. | Semi-structured interviews. | Situational analysis grounded theory methods. | 1 -6 years post stroke, 50-70 years old, residing in their own homes in an urban area. | In long-term care, severely aphasic. | Resuming activities was an iterative process of scaffolding small tasks into activities through bargaining for access to practical support and inclusion into social situations. Although participants geared up to manage their condition and access activities, for the most part they were not in charge of the services and supports they required. They had little control over who was accepted to rehabilitation, for which services they qualified or disability policies. | Participants were volunteers and affiliated with community programmes so likely a self-selected highly motivated group. Urban population so not generalisable  to rural populations. Small sample size.
Gender differences | [NAME] and [NAME].  Elderly peoples' experience of nursing care after a stroke: from a gender perspective. Journal of Advanced Nursing. 2009. 65:2038-45 | To explore, from a gender perspective, older peoples' experiences of nursing care after a stroke. | Convenience sampling. | Interviews. | Qualitative content analysis. | 66 years of age or older and ability to understand and take part in an interview in Swedish. |  | There are gender differences in older patients’ experience of nursing care after a stroke. Older patients’ perceptions of nursing care are linked with their gender and to experiences of their lived bodies before they had the stroke. Nurses need to increase their awareness and knowledge about similarities and gender differences between the experiences and needs of older men and women. | Conducted in only one ward for stroke rehabilitation situated in a big city and with a limited number of interviewees. This may have limited the variation in the data and the transferability of the findings. The interviews were performed soon after the acute stroke event when the patients still needed nursing care, which could limit their experiences.
 | U. Lofmark and [NAME].  [NAME] stroke patients' negotiations within the hierarchic medical context. Qualitative Health Research.  2005. 15:778-90 | To analyze from a gender perspective how older women and men responded to treatment and care after stroke in the acute care setting, characterized by a medical hierarchic structure. | Maximum variation purposive sampling. | Two interviews, one on stroke ward and one at home. | Constant comparison - grounded theory. | UC | UC | Four subcategories identified as negotiations grounded in data: striving for autonomy, following the rules, building alliances, and criticizing the care. The subcategories were related to each other, resulting in a core category labelled' Negotiations Within the Medical Context'. Overall,  no major differences were found within the group of women and within the group of men in relation to marital status, social class, or level of disability concerning how they negotiated within the medical context. | UC
The patient's interpretation | [NAME], C.-J. Dubouloz, [NAME] and [NAME].  Meaning perspective transformation following stroke: the process of change. Disability & Rehabilitation.  2009. 31:1056-65 | To explore whether the change that occurs following stroke follows a process similar to transformative learning. | Convenience sampling. | Semi-structured interviews. | Constant comparative method according to the procedures for Grounded Theory outlined by [NAME] and [NAME]. | UC | UC | Meaning perspectives, as frames of reference for interpreting the dimensions of work, family role, illness/health, identity, living and recovery, transformed or emerged following stroke. The process of transformation started with the contributing factors defined as triggers: experience of limitations and feeling vulnerable. Transformation was then facilitated by knowledge, and choices to action that occurred in a cyclical manner with support creating an environment that enabled knowledge seeking and acquisition, decision-making and action. | Participants recruited primarily from a stroke support organisation,  they may have been inclined towards finding meaning in information, action and support from others. As well, their perceptions of their processes of adjustment come from retrospective reflection on the preceding 3–11 years. These perceptions may have changed over time and may still be open to change. Study provides insight into the experience of a small number of people who have experienced stroke and describe themselves as viewing life post-stroke in a generally positive way. Generalizability is limited due to narrow range of participant characteristics e.g. all were relatively young.
 | [NAME], [NAME], [NAME] and [NAME].  Patient perceptions having suffered a stroke in Galway. British Journal of Community Nursing.  2008. 13:384-90 | To explore Irish older people’s perception of their health and level of independence following a stroke, as well as illuminate the factors that enhanced or diminished their ability to maintain quality of life after their stroke. | Purposive sampling. | Semi-structured interviews. | Guided by the grounded theory approach using the constant comparative technique. | Over the age of 65, who were living with a stroke and who were willing and able to participate. | UC | Many participants reported a profound sense of loss in terms of identity and role function but despite their disability most continued to have a positive concept of health and adopted a functional approach, toward independence. The availability of transport and social connections had a significant impact on quality of life. Most participants were still struggling to adapt to their disability and subsequent experiences in a rather unsupportive environment. The need for health professionals to counsel stroke survivors and support them as they advance. | UC
 | E. Townend, [NAME], [NAME] and M. Sharpe.  Fear of recurrence and beliefs about preventing recurrence in persons who have suffered a stroke. Journal of Psychosomatic Research.  2006. 61:747-755 | To investigate fear of recurrent stroke and beliefs about its causes and prevention in persons who have had a stroke. | Convenience sampling. | Both structured and semi-structured interviews. | Framework - constant comparison. | Stroke survivors; able to communicate. | Aphasia; not definitive stroke. | Many patients fear a recurrent stroke. They lack a sense of control over its causes and have fears associated with idiosyncratic and fatalistic beliefs. There is a need to elicit and address individuals’ own fears and beliefs about stroke before providing information about evidence-based secondary prevention. | Interviews may be subject to bias arising from how participants perceived the interviewer or from the impression they want to give to the interviewer, for example, wanting to portray themselves as strong-willed. Results may also only be confidently generalized to stroke patients who have been admitted to hospital and who survived without aphasia or severe cognitive impairment.
 | [NAME], I. Holmstrom and [NAME].  The meaning of rehabilitation for older people who have survived stroke. Journal of Nursing & Healthcare of Chronic Illnesses.  2009. 1:186-195 | To explore the meaning of rehabilitation to older Swedish stroke survivors, from the time of acute stroke to the end of rehabilitation. | Convenience sampling. | Two structured interviews. | Grounded theory analysis. | UC | UC | Older Swedish stroke survivors strive for a socially integrated life. Therapists should understand the meaning of stroke rehabilitation from the stroke patient perspective. Survivors need opportunities to practice mutual play activities, exchange everyday narratives and share positive feelings with friends and families, ideally in places where survivors have previously experience joy with those close to them. | The study was limited to older Swedish stroke survivors only.
 | [NAME]. Becoming normal: A grounded theory study on the emotional process of stroke recovery. Canadian Journal of Neuroscience Nursing. 2011. 33: 24-32 | To examine the emotional process of stroke recovery, personally experienced by stroke survivors. | Convenience sampling. | Individual formatted unstructured interviews and one focus group. | Grounded theory analysis. | Participants in a stroke recovery programme. | UC | The central problem experienced by these stroke survivors was being less than 100%. The basic social process used to address this problem was becoming normal, which is composed of three stages: recognizing stroke will not go away, choosing to work on recovery, and working on being normal. Physical and emotional recovery is inseparable, and recovery is directed towards regaining the ability to perform these certain things. | The initial study findings may have limited applicability.  The participants were self-identified survivors who stated they wanted to recover and chose to work hard on recovery. Participants were from an urban setting with rehabilitation units and outpatient therapy accessible. All were able to return to their own home. Word limit may prevent a thick description to ensure transferability of data.
Returning to driving | A.-H. [NAME], [NAME] and [NAME].  Lived experience of driving ability following stroke. Disability & Rehabilitation.  2009. 31:726-33 | To describe and expand our understanding of the lived-experience of driving ability after stroke in the context of undergoing a driving evaluation. | Purposive sampling. | Interviews were done on three occasions. | Empirical, Phenomenological, Psychological (EPP) method as developed by [NAME]. | (a) the diagnosis of a first time stroke, (b) being referred for a driving evaluation, (c) finished the first part of the driving evaluation (medical examination and neuropsychological testing), (d) planned to undergo an on-road driving evaluation and (e) being able to understand the interview questions and describe their experiences in Swedish. | UC | The information given and the routines for the procedures used from the initial advice to the time after finishing a driving evaluation could be developed to support the client in order to better handle the process and a possible revocation of the driving licence. Emotional support needs to be offered to those clients who have difficulties to go on with their lives after a revocation of their licence. A holistic perspective needs to be adopted that investigates not only the driving abilities but also how everyday life can be managed without the car. | Retrospective, future qualitative studies should start interviewing at the time when the client receives advice form professionals about driving cessation to provide a deeper understanding of the lived experiences from the time the advice not to drive is given. Only men participated, findings of this study cannot be generalised to the stroke population or to other countries.
 | [NAME], [NAME], [NAME], [NAME], J. Sturm, M. Pollack. Access and participation in the community: a prospective qualitative study of driving post-stroke. Disability & Rehabilitation. 2012. 34: 831-838 | To explore the impact of driving issues post-stroke in community-dwelling stroke survivors. | Purposive sampling. | Semi-structured interviews. | Inductive thematic approach using modified grounded theory. | Hospital admission and history and examination consistent with stroke. | Significant cognitive impairment (MMSE <24) or unable to communicate sufficiently to participate in an interview as determined by a  speech pathologist. | Emergent key themes included impact on quality of life, personal impacts, change to role performance and knowledge. Participants received inconsistent advice regarding return to driving. Confidence and availability determined public transport use.  Driving advice should be standard practice prior to discharge. Allied health professionals can play an essential role in interventions addressing community participation, driver re-training and alternative transport use. | Did not include those with post-stroke cognitive or language impairment, or those from rural areas.
Multimorbidity | [NAME], D. M. Connelly and [NAME].  "Holding me back": living with arthritis while recovering from stroke. Archives of Physical Medicine & Rehabilitation. 2009. 90:494-500 | To understand the experience of living with pre-existing knee arthritis while recovering from a first stroke. | Opportunistic purposeful sampling. | Interviews in the hospital (pre-discharge) and in their homes at 2 weeks and 3 months post-discharge. | Phenomenology in Practice approach. | All had sustained their first major unilateral hemispheric stroke, were English speaking, scored over 24 points on the Mini-Mental Status Examination, were discharged home, and had adequate verbal communication skills. | Participants who were discharged to a long-term care facility or reported other serious medical conditions, such as cancer or unstable heart conditions, were excluded. | Participants felt that arthritis was holding them back in their recovery from stroke. They did not alter their expectations for recovery despite their inability to fully participate in rehabilitation due to arthritis.  Options for managing their aggravated knees during stroke recovery were few. Participants proactively “experimented” with alternative techniques, with varied success. | A primary limitation of this study was that arthritis was self-reported by the participants. This study did not collect measures of severity or functional limitations that were arthritis specific, such as the Western Ontario and [NAME].  The second limitation is that member checking, which requires returning to participants with the intent of validating findings, was not completed in this study.
Using a wheelchair | [NAME], [NAME] and [NAME].  The experience of senior stroke survivors: factors in community participation among wheelchair users. Canadian Journal of Occupational Therapy.  2006. 73:18-25 | To investigate the lived experience of senior stroke survivors who used prescribed wheelchairs in their home and community. To help to understand the factors influencing community participation among elderly stroke survivors. | Convenience sample. | Semi-structured interviews, data sheet, photograph of wheelchair, field notes. | Constant comparative inductive method of analysis. Findings examined within the International Classification of Functioning, Disability and health framework. | 65 years or older; living at home; using wheeled mobility; needing assistance with daily living; living in metropolitan area of Canada; speaking and understanding English; cognitively competent. | UC | Overall, the wheelchair, manual or power, was an enabler of community participation. However, wheelchair us also created problems such as limiting destinations and creating increased dependence on others. | Men and women not equally represented. Aphasic patients excluded. Only 2 had powered devices.
 | [NAME], [NAME] and [NAME].  Acceptance and meanings of wheelchair use in senior stroke survivors. American Journal of Occupational Therapy.  2004. 58:221-30 | To gain understanding of the lived experience of senior stroke survivors who used prescribed wheelchairs in their homes and communities. | Convenience sample. | Semi-structured interviews, data sheet, photograph of wheelchair, field notes. | Constant comparative inductive method of analysis. Findings examined within the International Classification of Functioning, Disability and health framework. | 65 years or older; living at home; using wheeled mobility; needing assistance with daily living; living in metropolitan area of Canada; speaking and understanding English; cognitively competent. | UC | Three different categories of acceptance of wheelchair use were identified; reluctant acceptance, grateful acceptance, and internal acceptance. Increased mobility, varied social response, and loss of some valued roles were common to all three wheelchair acceptance categories. Aspects of level of burden, freedom, and spontaneity varied in degree among the three acceptance categories. As the wheelchair provided opportunity for increased continuity in the lives of these stroke survivors, it appeared to be accepted more fully and viewed more positively. Prestroke lifestyle and values need to be carefully considered in order to maximize acceptance of wheelchair use among senior stroke survivors. | Small number of participants, all from same metropolitan area. Men and women not equally represented. Aphasic patients excluded. Only 2 had powered devices.
Eating difficulties | [NAME] and [NAME].  [NAME] difficulties after stroke. Journal of Advanced Nursing.  2003. 43:360-9 | To investigate patients’ perceptions of eating difficulties 6 months after stroke. | Convenience sampling. | Semi-structured interviews. | Thematic analysis. | Clinical diagnosis of acute stroke with or without computerized tomogram confirmation. | Comprehension and communication were assessed using validated measures: the Mental Status Questionnaire (MSQ) and Frenchay Aphasia Screening Test (FAST). Unless a live-in carer was able to respond on behalf of stroke survivors, patients were exclude if they had scores <17 (if aged 20–60 years) or 16 (if aged 61–70 years) or15 (age 71 and over) for the combined comprehension and expression subscales of FAST and/or a score of <7 on MSQ. | All aspects of the stroke experience affected eating – physical impairment and restricted function, psychological and cognitive changes, social relationships and participation. Response. For both stroke survivors and those who care for them, the limited attention that food and eating-related issues has received is an important oversight. | Three stroke survivors denied problems, but were contradicted by their carers. It is possible that there were other participants, interviewed in the absence of a carer, who denied actual eating problems; this could not be detected.
 | [NAME], [NAME], [NAME], R. Wredling and [NAME].  Elderly persons' experience and management of eating situations 6 months after stroke. Disability & Rehabilitation.   2010. 32:1346-1353 | To explore the experience and management of eating situations among persons affected by stroke, 6 months after stroke onset. | Convenience  sampling. | Semi-structured interview. | Constant comparison - grounded theory. | UC | UC | Old value and habits and/or involvement from other people were the basis of mastering eating situations. New ways of mastering were also found, and some persons accepted and got used to the new situation and some had regained former routines. | Communication problems made responses incoherent. Limited duration of interviews.
 | [NAME], [NAME], [NAME], R. Wredling and [NAME].  Striving for control in eating situations after stroke. Scandinavian Journal of Caring Sciences.  2010. 24:772-780 | The aim of this study was to explore the experience of eating difficulties among patients with stroke 3 months after stroke onset. | Theoretical sampling. | Semi-structured interviews. | Constant comparison. | Patients with observed eating difficulties. | Non-Swedish speakers. | This study highlights the complexity of having eating difficulties after stroke. Aspects related to the participants’ striving for control are based on different strategies to eat safely and properly. Nurses can use this knowledge to support patients in their strive for control by observing them in eating situations. In addition, nurses can also ask them to describe and make explicit the experience of eating situations after stroke. | One short interview with each patient could affect richness of data.
Goal setting | [NAME] and [NAME].  An exploration of clients' goals during inpatient and outpatient stroke rehabilitation. International Journal of Therapy & Rehabilitation.  2009. 16:324-330 | To explore the goals set by clients during inpatient and outpatient phases of stroke rehab and to explore the goals of the therapy programmes, as reported by the clients. | Convenience sampling. | Semi structured interviews. | Template analysis, thematic analysis. | Experienced a stroke and identified by OT has having adequate communication and cognition to participate in the interview. | Inadequate communication and cognition, no diagnosis of stroke or uncertain diagnosis. | Trends in goal setting seen. In patients generally wanted to return to previous meaningful activities and goals. Outpatients begin to accept deficits and a function and structure level at a time when services are often being withdrawn. They should be given an opportunity for patient directed rehab. There is a discrepancy between goals for recovery and perceived goals. Better collaboration is needed. | Differences may have been individual rather than between the two groups, longitudinal study would be better. Only in one hospital. Differences in numbers and gender between groups. No collateral info from therapists about goals. No info on cognitive state which may affect response to therapy.
 | [NAME], [NAME], [NAME], [NAME], [NAME] and [NAME].  Patient readiness and ability to set recovery goals during the first 6 months after stroke. Journal of Allied Health.  2010. 39:e149-e154 | To describe the participants’ readiness and ability to set goals over time in the first 6 months following stroke. | Convenience sampling. | Semi- structured interviews. | Content analysis. | New stroke diagnosis; 18-70 yrs old; rehab programme; cognition. | UC | People who have just had a stroke need time to understand many of the terms and concepts that treating clinicians use, and new models need to acknowledge the importance of health literacy if both patients and carers are to participate in the rehabilitation process. People that have had a stroke have an important role to play in the development of these new models. | The researcher conducting the interviews was a member of the treating team therefore this may have impacted on the responses of the participants that she was treating.  The first two interviews for each participant took place within the hospital. This may have caused the participant to be reluctant to discuss negative experiences. The presence of family members (at the request of the participant) may have impacted on the participant’s responses. This may have caused the participant to feel that they had to present a strong and positive attitude. Participants in the study were 70 years or younger, therefore themes identified may not be transferable to an older population of people after stroke. The study could have been strengthened by providing participants with a transcript of their interview for comment and/or correction or a summary of the themes to determine whether they felt these were accurate.
Medications | J.A. Chambers, [NAME], [NAME], [NAME], [NAME], [NAME], [NAME]. Adherence to medication in stroke survivors: A qualitative comparison of low and high adherers. British Journal of Health Psychology. 2011. 16: 592-609 | To investigate factors that may explain variance in adherence to medication in stroke patients. | Purposive sampling. | Semi- structured interviews. | Thematic analysis. | No stroke prior to index event, diagnosed with an ischaemic stroke in the past 15 months, not resident in a nursing or residential home, living within  and having a permanent residential address. In addition, only patients who scored over approximately a 50 mile radius of Edinburgh. | Less than 13/20 on the Frenchay Comprehension test . | Those with poor adherence to medication reported both intentional and non-intentional non-adherence. Two main themes emerged: the importance of stability of a medication routine and beliefs about medication and treatment. High adherers reported remembering to take their medication and seeking support from both family and health professionals. They also had a realistic understanding of the consequences of non-adherence, and believed their medicine did them more good than harm. Low adherers reported forgetting their medication, sometimes intentionally not taking their medication and receiving poor support from medical staff. They disliked taking their medication, had limited knowledge about the medication rationale or intentions, and often disputed its benefits. | Number of participants was limited by method of sampling rather than data saturation, but data saturation was reached during analysis.
UC = unclear