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Clinical Rehabilitation; 2010; 24: 1045–1056

‘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 patient’s 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 dis- charge. 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 hemipar- esis 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 opportu- nity 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

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

Advances in acute stroke management and reha- bilitation have improved survival rates and increased the number of stroke survivors returning

10.1177/0269215510375901

1046 JP Wood et al.

to the community. 1,2 While these outcomes dem- onstrate the efficacy of care initiatives, stroke

survivors report dissatisfaction with their reinte- gration into community. 36 Community reintegra- tion refers to re-establishing or developing new

roles and relationships.

munity remains a challenge and many stroke sur- vivors experience depression, social isolation and

poor quality of life.

review stroke management strategies to more ade- quately address the process of community reinte- gration after stroke. Improving community reintegration requires greater collaboration between health care pro- viders and stroke survivors. Patient priorities for recovery differ from those of health care providers and focus on the social context of recovery, includ-

ing ‘normality’, re-establishing former identity and resuming roles. 1214 In contrast, health care pro- viders focus primarily on the execution of discrete

physical tasks.

of recovery, this focus on physical function does not meet all of the patient’s needs once they tran- sition to the community. Returning to work and maintaining occupational, family, social and rec- reational roles remain unaddressed issues for many patients. 5,11 After return home, social inter-

actions are further complicated by an uncoupling of self-identity, personal expectations and physical

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 survivor’s 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 ongo- ing recovery from the patient’s perspective once they return to the community. As a result, under- standing how the needs of stroke survivors change over time during the process of community reinte- gration is limited. A longitudinal, patient-centred investigation is warranted to identify the goals, challenges and needs of patients as they re-estab- lish themselves in their communities. The purpose of this study was to examine this process of

ability.

7

The transition to the com-

Clearly there is a need to

5,6,8–11

12

While critical in the early stages

6,15

community reintegration after stroke from the patient’s perspective.

Methods

The theoretical perspective of the authors is con- sistent with one of the tenets of symbolic interac- tionism (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 interac- tions 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’ per- spectives 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,

was originally designed to study pro-

cesses. It was used here to provide insight into

the patients’ perspectives and to facilitate under- standing 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 patient’s experience of stroke is essential to develop effective and appropriate strategies to facilitate recovery and promote com-

A literature review was

munity reintegration.

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.

19

15

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

and mobility function following stroke. From this larger pool of individuals, information-rich partic- ipants were purposively sampled that met the fol-

lowing 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 unilat- eral hemispheric stroke, were English speaking, scored 24 points on the Mini-Mental State

were discharged home and had

Examination, 25

adequate verbal communication (i.e. without evi- dence 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, physio- therapists 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 proce-

dures 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.

Data collection A series of one-on-one, 60-minute semi-struc- tured interviews were conducted with each partic- ipant. Open-ended interview questions were modified throughout data collection, which allowed for exploration of emerging themes

raised by participants.

Questions invited partici-

pants to describe their experience of recovering from stroke and to provide insight into the facili- tators and barriers to community reintegration. Questions included:

22

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

‘Getting back to real living’

1047

occasions; in the hospital (predischarge) and in their homes at two weeks, three months, six months and one year post rehabilitation. Data col- lection continued until saturation was achieved and no new data emerged. In grounded theory, 20–30 interviews are recommended to reach satu- ration. 26 Interviews were audiotaped and observa- tional 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 analysis Audiotapes of interviews were transcribed ver- batim. 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 line- by-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 dis-

cuss ongoing data collection, analysis and inter- pretation. Queries and disagreements were reconciled by returning to the transcripts. Consensus was reached at every stage of analysis.

Results

The sample (n ¼ 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

1048 JP Wood et al.

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 rehabil- itation. 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.

Participants described that the process of com- munity reintegration up to one year post stroke rehabilitation involved transitioning between a series of goals: gaining physical function, estab- lishing independence and adjusting expectations to get back to real living (Figure 1). Gaining physical function and establishing independence occurred during rehabilitation and once partici- pants 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 pro- cess was marked by some decrease in confidence for engaging in meaningful activity in the commu- nity 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. ill- ness or surgery).

E.g. Resuming a volunteer position

E.g. Getting dressed on own Establishing Adjusting my Stroke E.g. walking independence expectations Getting back
E.g. Getting dressed on own
Establishing
Adjusting my
Stroke
E.g. walking
independence
expectations
Getting back
to real living
Gaining
physical
function
Community reintegration
Confidence for community living

The process of community reintegration after stroke. The emergent theory of the process of community rein-

tegration involved transitioning through a series of goals. These included gaining physical function, establishing indepen- dence, 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.

Figure 1

Gaining physical function Gaining physical function described the partici- pants’ 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 per- form physical tasks such as self-care and walking.

I’m useless. I can’t do nothing. (Participant 5, Interview 2)

Another participant described his physical state:

They had to use a hoist to get me out of the wheel- chair into bed and out of the bed into the wheel- chair. So we go to the washroom, I couldn’t 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, par- ticipants judged their recovery based on physical gains.

When I first came in here I couldn’t stand up, I had no use of the left side, I couldn’t even feel and now I’m actually walking, I’m thrilled, and I am using the hand which I couldn’t do before and I’m beginning to reach, which again, this hand was always held up like this but now I’m moving it and it’s 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 free- dom was expressed by all:

Tomorrow I am going home, that’s why I am so happy. I feel like screaming: ‘Yeah, I’m going home!’. (Participant 3, Interview 1)

Going home marked an important milestone in returning to normality:

the

food’s going to be a thousand percent better. And my own bed. And everything I’m used to at home. So it’s gonna be good. Get back to real living.

There’s no bell going off every two minutes

‘Getting back to real living’

1049

This is kinda

like being

in jail. I’m 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. It’s just not the same. (Participant 10, Interview 3)

1050 JP Wood et al.

Socially, they were unable to perform previous roles such as cooking or paid work.

It’s 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 don’t know how far I am going to be able to go

when I get back. I’m just going to have to take it a bit at time. (Participant 2, Interview 1)

Decreased confidence concerning altered abili- ties 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 can’t drive and if I can’t drive I can’t go no

place. I really want to drive, I want to be inde- pendent. (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.

We’ll be able to go more places cause [my wife] is really holding the fort here, always driving and it’s quite a lot for her. (Participant 2, Interview 3)

Poor standardization surrounding the proce- dures of resuming driving was also reported. For those that did resume driving during the first year post rehabilitation, it was critical to regaining con- trol and independence.

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 I’m driving, good-bye’. Now I get to go to ball games by myself and I don’t have to rely on [my wife] to drive me and stuff like that. I’ve 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 partic- ipant 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 par- ticipants to try activities on their own. Participants wanted to feel like they had some control over the events in their lives.

I don’t feel in control as much as I’d like to be. (Participant 10, Interview 5)

Another participant described her family was constantly telling her to:

sit

down

don’t

do

this

don’t

do

that.

(Participant 1, Interview 2)

Participants wanted to do things on their own:

What’s the sense in helping me? I have to do it myself. (Participant 4, Interview 2)

Over-protective

caregivers

made

unheard and unimportant:

them

feel

Nobody listens to me. (Participant 10, Interview 2)

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

family or caring for children were based on previ- ous experience prior to the stroke and their interac- tions with others. It took many participants several months post rehabilitation to master this stage, and others still had not mastered it one year after inpa- tient rehabilitation. Strategies to adjust their expec- tations included reappraising personal abilities, taking one day at a time and accepting help. Reappraising personal abilities required partici- pants 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 you’re going to pay for it. (Participant 6, Interview 5)

Participants

expectations:

described

changing

personal

Just do the best you can with the predicament that you are in and don’t expect too much for yourself, it’ll gradually come. (Participant 5, Interview 5)

Being unable to fulfil their own expectations was frustrating and reduced motivation to partic- ipate 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 ain’t no hope. Why should I bother with all this [physical rehabilitation]? (Participant 7, Interview 4)

To manage expectations and decrease frustra- tion, 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, don’t worry about the next day, the next month. (Participant 3, Interview 3)

This approach was essential to balancing per- sonal expectations with their goals for living in the community.

‘Getting back to real living’

1051

Interactions with family, friends and formal health care providers were an important influence on the expectations stroke survivors had of them- selves. Accepting help from others was a struggle. Participants felt their independence was compro- mised when they required help from others.

The hardest thing is accepting all that help and not be able to do anything. That’s the hardest thing. I had to sit back and let them do things

they want to do everything for me, sit

down, Ma sit down, we’ll fix you a cup of tea it’s hard when you are used to doing everything myself. (Participant 1, Interview 2)

for me

However, learning to accept help enabled par- ticipants to engage in activities they enjoyed and to participate socially.

Well there are some things that you know you need the help and there’s other things that you don’t 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 peo-

ple

it’s encouraging that these people are

around me. (Participant 8, Interview 3)

Getting back to real living To reintegrate into community, participants strived towards

getting back to real living (Participant Interview 1)

5,

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 lat- ter half of the first year post stroke and remained an ongoing challenge for the participants.

1052 JP Wood et al.

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 enjoy- ment in daily living. Most but not every partici- pant 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.

I’ve watched people I’ve known while they were in the hospital. Their wives were very loving and very attentive and now after six months they’re going well shouldn’t you be able to do that? There’s 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 doesn’t get mad or anything but she’ll come in and

her hip will be sore or she’ll be cold

be doing it. (Participant 9, Interview 2)

I want to

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 I’m not so much anymore

because we don’t 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 don’t go bowling and I don’t go to work so I’ve

got nothing to talk about

You run out of things

to talk about unless you’re out there mingling. I don’t 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 it’s

really not the way I’d 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, I’d go out and have coffee, I’d read my newspaper and then on the way home I’d stop at the grocery store and buy that stuff well I can’t do that, I miss that and she doesn’t agree with me that I should get my license back and it’s 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.

we’ll probably go again.

(Participant 1, Interview 5)

I really enjoyed that

Meaningful activities provided fulfilment and satisfaction.

My life is totally, totally full. Computer, family,

painting, you know it’s a very full life

we have a million things to do, so it just astounds me how quickly time goes. (Participant 6,

Interview 4)

because

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

that’s why I took the job

and talking with people and I forget about my home, my kids and everything so that’s why I take the job. (Participant 3, Interview 3)

I am going outside

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)

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 phenomenologi- cal 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 identi- fying 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. Creating balance between capacity, self-identity and personal expectations was the ultimate chal- lenge 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

28

‘Getting back to real living’

1053

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

Other literature

has also highlighted the importance of expecta- tions during stroke recovery. Carlsson et al. inter- viewed 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 empha-

size that the expectations set by the stroke survivor themselves are most important to community rein- tegration. Stroke survivors need to re-evaluate and reset their expectations to a level congruent with

Thus, an important goal for

stroke rehabilitation is to engage formal and infor- mal caregivers in facilitating realistic and achiev-

able goal setting by stroke survivors while living in the community. Fluctuating confidence for community living contributed to a non-linear progression of the pro- cess of community reintegration after stroke (Figure 1). Whenever participants were transition- ing to a new goal, for example from gaining phys- ical function while in rehabilitation to establishing independence within the community, the experi- ence 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 expe- rience and were exposed to other confidence-build- ing sources. Confidence for community living referred to feeling proficient with new or previ- ously held meaningful roles and interacting in

their new reality.

by ‘taking each day as it comes’.

29

31

the community with an altered capacity and/or physical ability. Confidence for community living reflects the concept of self-efficacy proposed by Bandura in

Self-efficacy is defined

Social Cognitive Theory.

as a person’s belief in his or her capabilities to

complete a specific task or activity. According to Bandura, sources of self-efficacy include mastery, social persuasion, modelling and

33,34

32

1054 JP Wood et al.

physiological arousal. Previous research reported that stroke survivors with high self-care self- efficacy 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 reintegra-

tion.

tion, opportunities for mastery of physical tasks and modelling from peers are reduced and avail- ability of social persuasion varies for each individ-

ual. Hence, the transition to the community poses a substantial challenge for stroke survivors due to reduced sources of self-efficacy and fewer oppor- tunities 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 house- hold responsibilities. Meaningful roles provide enjoyment, motivation, fulfillment and quality of

life.

sure 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.

ture, 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 interac- tions 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 engag- ing in meaningful roles was an important source of self-perception and pivotal to community reinte- gration for participants in this study. Recently, the physical and emotional health of stroke survivors has been examined through engagement in meaningful activities. 17 For exam- ple, the Lifestyle Performance Model (LPM) describes that meaningful roles help individuals

6

After discharge from inpatient rehabilita-

30,37–39

However, loss of employment and lei-

9,42–44

In addition to this litera-

actualize their life’s meaning in four domains:

(1) self-care, (2) societal contribution, (3) interper- sonal engagement and (4) intrinsic gratifica-

tion. 47,48

stroke survivors in this study emphasized the need for independence in self-care tasks, making contributions to their households and communi- ties, and interaction with others and enjoyment through activity. Interestingly, the participants in this study generally addressed these domains chro- nologically 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 long- term care of stroke survivors. 17 Interventions post rehabilitation should incorporate the use of tools which identify activities that provide oppor- tunities 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 transfer- ability 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, work- ing 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 partici- pants scored higher than 24 points on the Mini Mental State Exam (MMSE), the experiences of stroke survivors with aphasia or cognitive disor- ders were not included. It is important to recognize the type of participants in this study when consid- ering the transferability of the findings. Several participants were unable to create a bal- ance 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

Consistent with these LPM domains,

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 pro- viders can help them to set realistic and attainable goals for themselves. Development of these goals would benefit especially from developing self- efficacy 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 survivor’s life, future studies need to examine com- munity reintegration beyond one year post reha- bilitation to understand the challenges faced by stroke survivors of all ages with time. Future work should also examine the experiences of care- givers, 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 physi- cal capacity. These expectations are influ- enced by interactions with others and stroke survivors would benefit from commu- nity support networks and facilities that pro- mote engagement in meaningful roles through interaction with peers, informal and formal caregivers.

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