Clinical Rehabilitation; 2010; 24: 10451056

Getting back to real living: a qualitative study of the process of community reintegration after stroke
Jennifer P Wood Department of Kinesiology, McMaster University, Hamilton, Denise M Connelly School of Physical Therapy, Faculty of Health Sciences, University of Western Ontario, London and Monica R Maly School of Rehabilitation Science, Faculty of Health Science, Institute for Applied Health Science, McMaster University Hamilton, Ontario, Canada Received 29th November 2009; returned for revisions 30th January 2010; revised manuscript accepted 9th April 2010.

Objectives: To examine the process of community reintegration over the first year following stroke, from the patients perspective. Design: Qualitative, longitudinal, grounded theory study involving ten participants. During the first year post discharge from inpatient rehabilitation, 46 one-on-one semi-structured interviews were conducted with ten participants. Interviews were completed with participants before discharge from inpatient stroke rehabilitation and in their homes at two weeks, three months, six months and one year post discharge. Analysis was guided by grounded theory methods described by Corbin and Strauss. Subjects: Four women and six men (mean age 59.6 18.0, all with left hemiparesis and without aphasia) who had sustained their first hemispheric stroke and were returning to the community following inpatient rehabilitation. Results: The process of community reintegration after stroke involved transitioning through a series of goals: gaining physical function, establishing independence, adjusting expectations and getting back to real living. The ultimate challenge for stroke survivors during this process of community reintegration was to create a balance between their expectations of themselves and their physical capacity to engage in meaningful roles. Conclusions: Over the first year after stroke, participants reported that the process of community reintegration was marked by ongoing changes in their goals. Formal and informal caregivers need to work with stroke survivors living in the community to facilitate realistic and achievable goal setting. Tools which identify meaningful activities should also be incorporated to provide stroke survivors with the opportunity to contribute and engage with others in the community.

Introduction
Address for correspondence: Monica R Maly, 435 IAHS Rehabilitation Science, McMaster University, 1400 Main Street West, Hamilton Ontario L8S 1C7, Canada. e-mail: mmaly@mcmaster.ca

Advances in acute stroke management and rehabilitation have improved survival rates and increased the number of stroke survivors returning
10.1177/0269215510375901

The Author(s), 2010. Reprints and permissions: http://www.sagepub.co.uk/journalsPermissions.nav

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JP Wood et al. community reintegration after stroke from the patients perspective.

to the community.1,2 While these outcomes demonstrate the efficacy of care initiatives, stroke survivors report dissatisfaction with their reintegration into community.36 Community reintegration refers to re-establishing or developing new roles and relationships.7 The transition to the community remains a challenge and many stroke survivors experience depression, social isolation and poor quality of life.5,6,811 Clearly there is a need to review stroke management strategies to more adequately address the process of community reintegration after stroke. Improving community reintegration requires greater collaboration between health care providers and stroke survivors. Patient priorities for recovery differ from those of health care providers and focus on the social context of recovery, including normality, re-establishing former identity and resuming roles.1214 In contrast, health care providers focus primarily on the execution of discrete physical tasks.12 While critical in the early stages of recovery, this focus on physical function does not meet all of the patients needs once they transition to the community. Returning to work and maintaining occupational, family, social and recreational roles remain unaddressed issues for many patients.5,11 After return home, social interactions are further complicated by an uncoupling of self-identity, personal expectations and physical ability.6,15 As survivors recover from stroke, they need to reconcile changes in their bodies with their expectations for role engagement.16 Both physical capacity and self-identity change rapidly over time during stroke recovery, making it difficult to match a stroke survivors expectations for role engagement with their physical status.17 In order to enhance rehabilitation it is necessary to focus on social engagement and identify changing needs during the process of community reintegration from the patients perspective. Little longitudinal work has documented ongoing recovery from the patients perspective once they return to the community. As a result, understanding how the needs of stroke survivors change over time during the process of community reintegration is limited. A longitudinal, patient-centred investigation is warranted to identify the goals, challenges and needs of patients as they re-establish themselves in their communities. The purpose of this study was to examine this process of

Methods
The theoretical perspective of the authors is consistent with one of the tenets of symbolic interactionism (SI), which states that meaning is derived from interaction with others. Participants were considered actors who continually adjusted their behaviour based on their interpretation of interactions with others.18 Participants are believed to have the means to control their actions, although they may not always use this ability.19 Symbolic interactionism is a complex and broad sociological theory; however, in this study the authors focused on meaning derived from interaction. Grounded theory was selected as an inductive approach to provide insight into the patients perspectives and to generate theory that is grounded in the data collected from the field.20,21 Grounded theory methodology, as described by Corbin and Strauss,19 was originally designed to study processes. It was used here to provide insight into the patients perspectives and to facilitate understanding of the experiences of stroke survivors over the first year post stroke rehabilitation.22,23 Community reintegration is a complex process and cannot be readily measured by quantitative means. Understanding a patients experience of stroke is essential to develop effective and appropriate strategies to facilitate recovery and promote community reintegration.15A literature review was conducted to enhance sensitivity to relevant issues and research, and to guide development of the research question. Grounded theory guided by Corbin and Strauss methodology also involves systematic data collection and analysis, including theoretical sampling, saturation and constant comparison.

Sampling Participants were recruited from two inpatient rehabilitation facilities between 2007 and 2008. Participants were sampled from an ongoing randomized control trial investigating the effect of physical therapy intervention on physical capacity

Getting back to real living and mobility function following stroke. From this larger pool of individuals, information-rich participants were purposively sampled that met the following criteria: men and women of varying ages, who were married, single, lived alone or with other people, and who were employed or unemployed.24 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. Of all patients entered in stroke rehabilitation at these facilities, physiotherapists actively working with patients identified potential participants who met the inclusion and exclusion criteria. These patients were referred to an on-site research assistant if interested in participating. The research assistant formally screened each potential participant, explained the study procedures and obtained written informed consent. This study was approved by The University of Western Ontario Health Sciences Research Ethics Board and the research committees of the two participating hospitals.

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occasions; in the hospital (predischarge) and in their homes at two weeks, three months, six months and one year post rehabilitation. Data collection continued until saturation was achieved and no new data emerged. In grounded theory, 2030 interviews are recommended to reach saturation.26 Interviews were audiotaped and observational field notes were written. These notes and post-interview memoing were completed to describe context, environment and other relevant observations during the interviews. These notes were used primarily to corroborate data extracted from the interviews.

Data collection A series of one-on-one, 60-minute semi-structured interviews were conducted with each participant. Open-ended interview questions were modified throughout data collection, which allowed for exploration of emerging themes raised by participants.22 Questions invited participants to describe their experience of recovering from stroke and to provide insight into the facilitators and barriers to community reintegration. Questions included:  What are your roles?  How have your relationships changed?  What do you do to fill the time? All interviews were conducted by the same author (JW) who had no previous relationship with the participants. Participants were interviewed on five

Data analysis Audiotapes of interviews were transcribed verbatim. NVIV07 (QSR International, Doncaster, Victoria, Australia) facilitated data management and analysis. Guided by methods described by Corbin and Strauss, open, axial and selective coding were used to analyse the data.19,22 Open coding involved reading the transcripts lineby-line and labelling all important information. Axial coding explored the relationships between open codes, to create categories by linking open codes that shared a common theme. Selective coding identified a core category that was central to the phenomenon and identified a longitudinal storyline. Categories were validated by returning to the data and obtaining direct quotations from participants. All transcripts were coded by the first author. One other investigator (MM) independently reviewed five transcripts as the coding scheme developed. The research team met weekly to discuss ongoing data collection, analysis and interpretation. Queries and disagreements were reconciled by returning to the transcripts. Consensus was reached at every stage of analysis.

Results
The sample (n 10) included four women and six men between the ages of 31 and 79. All were right hand dominant, had sustained an ischaemic stroke resulting in a left-sided hemiparesis. Participants included 8 Caucasians, 1 East Indian

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JP Wood et al. Participants described that the process of community reintegration up to one year post stroke rehabilitation involved transitioning between a series of goals: gaining physical function, establishing independence and adjusting expectations to get back to real living (Figure 1). Gaining physical function and establishing independence occurred during rehabilitation and once participants returned home. However, it took several months for participants to focus on balancing their expectations of themselves with their physical capacity. Transitioning to a new stage of the process was marked by some decrease in confidence for engaging in meaningful activity in the community setting. Despite these fluctuations, the overall progression through stages over one year was matched with an accumulation of confidence for community living. Participants transitioned through the stages at different rates, sometimes repeatedly, before moving to the next. Participants could also move backwards in the process, particularly if a set-back occurred (i.e. illness or surgery).

and 1 Aboriginal. Two participants lived alone (both women), six participants lived with their spouse (one woman) and two lived with other family members (one woman). Four participants (one woman) had paid employment prior to the stroke. One woman, previously not employed, gained paid employment by one year post rehabilitation. All participants had children, however, only one had children who lived at home and required care (younger than 10 years old). Four participants (one woman) received home care and four received outpatient physiotherapy (one woman) following discharge from hospital. Forty-six interviews were completed. We aimed to interview each participant in the hospital (pre discharge) and at two weeks, three months, six months and one year post stroke rehabilitation. Eight participants completed all five interviews. One participant moved without providing contact information and, as a result, subsequent interviews were not completed (three missed interviews). Another participant missed one interview while on vacation.

E.g. Resuming a volunteer position E.g. Getting dressed on own Confidence for community living

Stroke

E.g. walking

Establishing independence

Adjusting my expectations

Getting back to real living

Gaining physical function

Community reintegration

Figure 1 The process of community reintegration after stroke. The emergent theory of the process of community reintegration involved transitioning through a series of goals. These included gaining physical function, establishing independence, adjusting expectations and getting back to real living. Common milestones for these goals included being able to walk (gaining physical function), getting dressed on own (establishing independence) and resuming meaningful activity (e.g. volunteering (getting back to real living)). Fluctuating confidence for community living contributed to the non-linear progression of the process of community reintegration. Transitioning to a new stage of the process was marked by a decrease in confidence. Progression through stages, however, was matched with an accumulation of confidence.

Getting back to real living Gaining physical function Gaining physical function described the participants goal of improving performance of activities of daily living (i.e. bathing and dressing) during inpatient rehabilitation. Initially poor balance and weakness limited participants abilities to perform physical tasks such as self-care and walking. Im useless. I cant do nothing. (Participant 5, Interview 2) Another participant described his physical state: They had to use a hoist to get me out of the wheelchair into bed and out of the bed into the wheelchair. So we go to the washroom, I couldnt even get out of the chair myself, somebody had to be there, somebody had to wipe me, it was really a disaster. (Participant 10, Interview 1) Most of the time was spent engaged in therapy to improve physical skills. With such a focus, participants judged their recovery based on physical gains. When I first came in here I couldnt stand up, I had no use of the left side, I couldnt even feel and now Im actually walking, Im thrilled, and I am using the hand which I couldnt do before and Im beginning to reach, which again, this hand was always held up like this but now Im moving it and its just wonderful. (Participant 8, Interview 1) Returning home required a specific level of physical ability and was the primary source of motivation. Excitement for the anticipated freedom was expressed by all: Tomorrow I am going home, thats why I am so happy. I feel like screaming: Yeah, Im going home!. (Participant 3, Interview 1) Going home marked an important milestone in returning to normality: Theres no bell going off every two minutes . . . the foods going to be a thousand percent better. And my own bed. And everything Im used to at home. So its gonna be good. Get back to real living.

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This is kinda like being in jail. Im looking forward to it. (Participant 5, Interview 1)

Establishing independence Once home, participants goals shifted toward establishing independence. This stage occurred during the first six months post rehabilitation. Establishing independence required participants to transition from feeling overwhelmed to gaining control. Essentially participants wanted: to go where I want, when I want. (Participant 1, Interview 1) Returning home was overwhelming. Participants were confused, busy and tired because of health-related appointments and visits from friends and family. Everybody wanted to come and see me . . . I stayed up and visited and that tired me out . . . it took me a long time to get over it. (Participant 2, Interview 2) Although intended to relieve participants of responsibilities and ease the transition to home, visits from health care providers were also overwhelming: I had the occupational therapist coming in, I had the nurse coming and for the first three or four weeks some help was coming in every day. So I found it rather overwhelming with all these people coming and I also found it very confusing and tiring. (Participant 8, Interview 3) An inability to participate in previous roles made participants feel helpless and threatened their independence. I play no role in life right now. (Participant 8, Interview 2) Physically, they relied on others for assistance with activities, such as carrying groceries. Now I have to wait for somebody to do it for me. Its just not the same. (Participant 10, Interview 3)

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JP Wood et al. It was getting to be a pain in the butt waiting for the wife to be in the right mood to, especially when baseball or fastball season was on, it was too hot or too buggy or too cold or it was too this. I said, Well Im driving, good-bye. Now I get to go to ball games by myself and I dont have to rely on [my wife] to drive me and stuff like that. Ive got my freedom. (Participant 5, Interview 3) Appropriate support from friends, family and health care providers also facilitated establishing independence. Assistance and support improved confidence to attempt and accomplish activities. For example, instead of being dressed, one participant described that his wife laid out his clothes but he was able to dress himself. On the other hand, although well-intentioned, over-protective caregivers did not provide opportunities for participants to try activities on their own. Participants wanted to feel like they had some control over the events in their lives. I dont feel in control as much as Id like to be. (Participant 10, Interview 5) Another participant described her family was constantly telling her to: sit down . . . dont do this dont do that. (Participant 1, Interview 2) Participants wanted to do things on their own: Whats the sense in helping me? I have to do it myself. (Participant 4, Interview 2) Over-protective caregivers made them feel unheard and unimportant: Nobody listens to me. (Participant 10, Interview 2)

Socially, they were unable to perform previous roles such as cooking or paid work. Its been very hard for [my mother] cause now she does everything. She cooks the meals, she makes the beds, she gets the groceries. (Participant 7, Interview 3) After stroke, confidence was dramatically altered: I dont know how far I am going to be able to go when I get back. Im just going to have to take it a bit at time. (Participant 2, Interview 1) Decreased confidence concerning altered abilities and what the future may bring were described by the participants: There are sobering aspects of life. Will I be able to drive? How much of my vision is going to improve? (Participant 6, Interview 1) Personal achievements, such as dressing and feeding without assistance increased confidence in their ability to accomplish physical tasks. I feel more comfortable and confident in myself. (Participant 8, Interview 3) This contributed to the participants ability to establish independence. Driving was frequently related to independence: I cant drive and if I cant drive I cant go no place. I really want to drive, I want to be independent. (Participant 1, Interview 1) Not being able to drive made participants feel like they were inconveniencing others as well as limiting their ability to get around. Well be able to go more places cause [my wife] is really holding the fort here, always driving and its quite a lot for her. (Participant 2, Interview 3) Poor standardization surrounding the procedures of resuming driving was also reported. For those that did resume driving during the first year post rehabilitation, it was critical to regaining control and independence.

Adjusting my expectations During the next stage of the process of community reintegration, participants adjusted their expectations of themselves relative to their capacities. The participants expectations of their abilities to perform activities such as shovelling snow or engaging in roles such as earning money for the

Getting back to real living family or caring for children were based on previous experience prior to the stroke and their interactions with others. It took many participants several months post rehabilitation to master this stage, and others still had not mastered it one year after inpatient rehabilitation. Strategies to adjust their expectations included reappraising personal abilities, taking one day at a time and accepting help. Reappraising personal abilities required participants to come to terms with and adapt to changes in their bodies as a result of stroke. I think the hardest part is getting to learn to live with your new body. You have to take a rest when your body tells you otherwise youre going to pay for it. (Participant 6, Interview 5) Participants expectations: described changing personal

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Interactions with family, friends and formal health care providers were an important influence on the expectations stroke survivors had of themselves. Accepting help from others was a struggle. Participants felt their independence was compromised when they required help from others. The hardest thing is accepting all that help and not be able to do anything. Thats the hardest thing. I had to sit back and let them do things for me . . . they want to do everything for me, sit down, Ma sit down, well fix you a cup of tea . . . its hard when you are used to doing everything myself. (Participant 1, Interview 2) However, learning to accept help enabled participants to engage in activities they enjoyed and to participate socially. Well there are some things that you know you need the help and theres other things that you dont need the help. (Participant 5, Interview 5) As a result participants were able to interact in the community: When it comes to social events and going out I have to thank my friend because she drives and the same thing with my son, they take me out for the day or he picks me up and takes me for the weekend, so I have to attribute that to those people . . . its encouraging that these people are around me. (Participant 8, Interview 3)

Just do the best you can with the predicament that you are in and dont expect too much for yourself, itll gradually come. (Participant 5, Interview 5) Being unable to fulfil their own expectations was frustrating and reduced motivation to participate socially or in physical activity (i.e. going out for lunch or physical therapy). After being home for a few months, one participant described her continued frustration and hopelessness: Cause there aint no hope. Why should I bother with all this [physical rehabilitation]? (Participant 7, Interview 4) To manage expectations and decrease frustration, some participants tried to take one day at a time. (Participant 9, Interview 3) This strategy forced participants to live in the present and not focus on the future: Just think you are alive, enjoy life, dont worry about the next day, the next month. (Participant 3, Interview 3) This approach was essential to balancing personal expectations with their goals for living in the community.

Getting back to real living To reintegrate into community, participants strived towards getting back to real living (Participant 5, Interview 1) by engaging in meaningful activities as well as maintaining and developing relationships. Interactions with others were critical to getting back to real living and this stage occurred in the latter half of the first year post stroke and remained an ongoing challenge for the participants.

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JP Wood et al. to talk about unless youre out there mingling. I dont have anything to say anymore, nothing. (Participant 7, Interview 3) Participants with smaller social networks often felt like a burden to others, had low motivation and fewer opportunities to engage in meaningful activity. The interruption in meaningful activity had a significant impact on well-being: I gotta wait for her to be ready to do it and so its really not the way Id like my life. Cause I used to run all the errands. I used to go buy the groceries and stuff and when I got up in the morning I always grabbed the grocery list, Id go out and have coffee, Id read my newspaper and then on the way home Id stop at the grocery store and buy that stuff well I cant do that, I miss that and she doesnt agree with me that I should get my license back and its like jail. (Participant 10, Interview 5) As one year from discharge approached, several participants described that they were able to engage in meaningful activities: We all went to see five different plays this winter. I really enjoyed that . . . well probably go again. (Participant 1, Interview 5) Meaningful activities provided fulfilment and satisfaction. My life is totally, totally full. Computer, family, painting, you know its a very full life . . . because we have a million things to do, so it just astounds me how quickly time goes. (Participant 6, Interview 4) Another participant gained a new dimension to life from the employment she gained after her stroke. If I stay at home then I feel so much stress and everything but not if I go out of the home, so thats why I took the job . . . I am going outside and talking with people and I forget about my home, my kids and everything so thats why I take the job. (Participant 3, Interview 3)

Social integration and social life to me is very important in my life. To be with other people, to help other people such as my volunteer work which is also social work, I feel that I am a part back into life again. (Participant 8, Interview 5) Meaningful roles, activities and relationships were fundamental to finding fulfilment and enjoyment in daily living. Most but not every participant had reintegrated according to their comments regarding fulfillment and enjoyment in life by the conclusion of the study. Some participants described that they were not able to reintegrate into community by one year post stroke. These participants did not engage in valued roles or activities and were unable to develop and maintain meaningful relationships. Ive watched people Ive known while they were in the hospital. Their wives were very loving and very attentive and now after six months theyre going well shouldnt you be able to do that? Theres a lot of different problems. (Participant 10, Interview 3) For the participants, loss of roles within the home and community resulted in dissatisfaction and boredom. Participants were upset to see others assume roles and responsibilities that they could no longer perform. When I see a bunch of snow, I see her [wife] out there shovelling I get very upset with myself. She doesnt get mad or anything but shell come in and her hip will be sore or shell be cold . . . I want to be doing it. (Participant 9, Interview 2) Participants unable to fulfill previous roles, such as employment, were also the same participants that described being unmotivated to engage socially. I used to be social and Im not so much anymore because we dont have the same interests anymore because you know, you have friends at work, they stay at work, you have friends at bowling, they stay at bowling, they just stay in their own groups. I dont go bowling and I dont go to work so Ive got nothing to talk about . . . You run out of things

Getting back to real living Meaningful activity also provided participants opportunities to give back, particularly to those they cared for. I love being with children and I feel satisfied that I have given a little of my time. (Participant 8, Interview 5)

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Discussion
This study exposed the progression of goals that community-dwelling stroke survivors aimed to achieve during the first year post discharge from inpatient rehabilitation. Previous phenomenological work showed that stroke survivors rebuilt and reappraised their personal and social worlds.27 Our findings contribute to the development of the process of community reintegration by identifying the ongoing change in goals that occurred beyond institutionalized stroke rehabilitation. For example, establishing independence occurred early, once participants returned home. However, they required several months before they focused on balancing their expectations of themselves with their physical capacity. Some participants described that they were not able to create this balance and did not reintegrate into community by one year post stroke. For these participants they described being unable to re-establish or develop new roles and relationships within their home, family or community. The findings suggest that the needs of stroke survivors are constantly changing over the first year following stroke. Previous research has also demonstrated that health care providers, friends and family need to understand the evolving priorities and needs of stroke survivors to provide individualized, timely and appropriate care.28 Creating balance between capacity, self-identity and personal expectations was the ultimate challenge of community reintegration. Participants who were able to come to terms with and adapt to their new capacity used strategies such as accepting help and taking one day at a time, adjusting their personal expectations. Patients with mild stroke, such as those in this study, are

frequently frustrated by unfulfilled expectations that they set for themselves. Some stroke survivors experience uncertainty in their day-to-day lives and they managed this uncertainty for the future by taking each day as it comes.29 Other literature has also highlighted the importance of expectations during stroke recovery. Carlsson et al. interviewed 18 community-dwelling persons one year after sustaining a mild stroke (Barthel Index score 450) to investigate how they coped with their new life situation. Being unable to fulfil expectations set by others decreased the stroke survivors confidence for community living.30 In contrast, the findings of the current study emphasize that the expectations set by the stroke survivor themselves are most important to community reintegration. Stroke survivors need to re-evaluate and reset their expectations to a level congruent with their new reality.31 Thus, an important goal for stroke rehabilitation is to engage formal and informal caregivers in facilitating realistic and achievable goal setting by stroke survivors while living in the community. Fluctuating confidence for community living contributed to a non-linear progression of the process of community reintegration after stroke (Figure 1). Whenever participants were transitioning to a new goal, for example from gaining physical function while in rehabilitation to establishing independence within the community, the experience was marked by a decrease in confidence. This decreased confidence was the result of being faced with challenges not experienced since their stroke. Progression through each stage, however, was matched with gradual increases in confidence for community living as participants gained experience and were exposed to other confidence-building sources. Confidence for community living referred to feeling proficient with new or previously held meaningful roles and interacting in the community with an altered capacity and/or physical ability. Confidence for community living reflects the concept of self-efficacy proposed by Bandura in Social Cognitive Theory.32 Self-efficacy is defined as a persons belief in his or her capabilities to complete a specific task or activity.33,34 According to Bandura, sources of self-efficacy include mastery, social persuasion, modelling and

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JP Wood et al. actualize their lifes meaning in four domains: (1) self-care, (2) societal contribution, (3) interpersonal engagement and (4) intrinsic gratification.47,48 Consistent with these LPM domains, stroke survivors in this study emphasized the need for independence in self-care tasks, making contributions to their households and communities, and interaction with others and enjoyment through activity. Interestingly, the participants in this study generally addressed these domains chronologically over their first year post rehabilitation. Thus, the LPM provides an excellent framework for providing support once stroke survivors return home. Facilitating participation in meaningful activities should be incorporated into the longterm care of stroke survivors.17 Interventions post rehabilitation should incorporate the use of tools which identify activities that provide opportunities to contribute, gain mastery and engage with others in the community. One limitation of this study was generalizability. 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. Although diversity was achieved in gender, working status and living arrangements, we did not achieve diversity in the severity of stroke. Stroke survivors with receptive or expressive aphasia, or left hemispheric stroke were not included because the study inclusion criterion required adequate verbal communication skills. Because all participants scored higher than 24 points on the Mini Mental State Exam (MMSE), the experiences of stroke survivors with aphasia or cognitive disorders were not included. It is important to recognize the type of participants in this study when considering the transferability of the findings. Several participants were unable to create a balance between their capacity and their expectations of themselves and had not reintegrated into their community by one year. These expectations were based primarily on their interactions with others. Therefore, providing caregivers and health care professionals with insight into the changing goals and challenges faced by stroke survivors will enable them to change their interactions with stroke survivors to provide timely and appropriate support. Clinicians need to address the importance

physiological arousal. Previous research reported that stroke survivors with high self-care selfefficacy demonstrated better quality of life and less depression.35,36 Poor balance self-efficacy, which reflects a fear of falling, loss of balance and unsteadiness, is a psychological barrier that may lead to activity avoidance, deterioration of physical function and poor community reintegration.6 After discharge from inpatient rehabilitation, opportunities for mastery of physical tasks and modelling from peers are reduced and availability of social persuasion varies for each individual. Hence, 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. Engaging in meaningful roles presented another challenge to stroke survivors as they reintegrated into community. For the participants, examples of meaningful roles included but were not limited to paid employment, volunteer positions and family roles such as childcare and contributions to household responsibilities. Meaningful roles provide enjoyment, motivation, fulfillment and quality of life.30,3739 However, loss of employment and leisure has been frequently reported following stroke.11,15,40,41 Reduced ability to perform roles contributed to isolation, boredom and a decreased sense of well-being among community-dwelling stroke survivors.9,4244 In addition to this literature, our findings indicated that meaningful roles helped to resolve changes in self-perception that occurred after stroke. Since perception of oneself is influenced by occupational status and interactions with others, this aspect of recovery cannot be overstated.45 Consistent with our findings, the struggle of chronically ill patients to accept their illness and changed self-perception involved adapting and accommodating for physical losses, leading to acceptance of illness and improved recovery.46 Thus, it was not surprising that engaging in meaningful roles was an important source of self-perception and pivotal to community reintegration for participants in this study. Recently, the physical and emotional health of stroke survivors has been examined through engagement in meaningful activities.17 For example, the Lifestyle Performance Model (LPM) describes that meaningful roles help individuals

Getting back to real living of creating balance between capacity and personal expectations. Challenges that may be faced by the stroke survivors need to be addressed by providing a realistic prognosis of capacity. However, by working with stroke survivors, health care providers can help them to set realistic and attainable goals for themselves. Development of these goals would benefit especially from developing selfefficacy through mastery of skills. Stroke survivors would also benefit from peer support through stroke groups or clubs. Given that the process of community reintegration will probably continue for the duration of the stroke survivors life, future studies need to examine community reintegration beyond one year post rehabilitation to understand the challenges faced by stroke survivors of all ages with time. Future work should also examine the experiences of caregivers, family and friends during stroke recovery to provide new perspectives of supports needed to facilitate community reintegration. There is a clear need to assess and properly support caregivers as they care for and aid stroke survivors in the community. Clinical message  Community reintegration requires stroke survivors to create balance between their expectations of themselves with their physical capacity. These expectations are influenced by interactions with others and stroke survivors would benefit from community support networks and facilities that promote engagement in meaningful roles through interaction with peers, informal and formal caregivers.

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References
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