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Clinical Rehabilitation
; 2010;
24:
1045–1056
‘Getting back to real living’: a qualitative study of theprocess of community reintegration after stroke
Jennifer P Wood
Department of Kinesiology, McMaster University, Hamilton,
Denise M Connelly
School of PhysicalTherapy, Faculty of Health Sciences, University of Western Ontario, London and
Monica R Maly
School of RehabilitationScience, Faculty of Health Science, Institute for Applied Health Science, McMaster University Hamilton, Ontario, CanadaReceived 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 yearfollowing 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-onesemi-structured interviews were conducted with ten participants. Interviews werecompleted with participants before discharge from inpatient stroke rehabilitationand 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 andStrauss.
Subjects
: Four women and six men (mean age 59.6
Æ
18.0, all with left hemipar-esis and without aphasia) who had sustained their first hemispheric stroke andwere returning to the community following inpatient rehabilitation.
Results
: The process of community reintegration after stroke involved transitioningthrough a series of goals: gaining physical function, establishing independence,adjusting expectations and getting back to real living. The ultimate challenge forstroke survivors during this process of community reintegration was to create abalance between their expectations of themselves and their physical capacity toengage in meaningful roles.
Conclusions
: Over the first year after stroke, participants reported that the processof community reintegration was marked by ongoing changes in their goals. Formaland informal caregivers need to work with stroke survivors living in the communityto facilitate realistic and achievable goal setting. Tools which identify meaningfulactivities should also be incorporated to provide stroke survivors with the opportu-nity to contribute and engage with others in the community.
Introduction
Advances in acute stroke management and reha-bilitation have improved survival rates andincreased the number of stroke survivors returning
Address for correspondence: Monica R Maly, 435 IAHSRehabilitation Science, McMaster University, 1400 MainStreet West, Hamilton Ontario L8S 1C7, Canada.e-mail: mmaly@mcmaster.ca
ß
The Author(s), 2010.Reprints and permissions: http://www.sagepub.co.uk/journalsPermissions.nav 10.1177/0269215510375901
 
to the community.
1,2
While these outcomes dem-onstrate the efficacy of care initiatives, strokesurvivors report dissatisfaction with their reinte-gration into community.
3–6
Community reintegra-tion refers to re-establishing or developing newroles and relationships.
7
The transition to the com-munity remains a challenge and many stroke sur-vivors experience depression, social isolation andpoor quality of life.
5,6,8–11
Clearly there is a need toreview stroke management strategies to more ade-quately address the process of community reinte-gration after stroke.Improving community reintegration requiresgreater collaboration between health care pro-viders and stroke survivors. Patient priorities forrecovery differ from those of health care providersand focus on the social context of recovery, includ-ing ‘normality’, re-establishing former identity andresuming roles.
12–14
In contrast, health care pro-viders focus primarily on the execution of discretephysical tasks.
12
While critical in the early stagesof recovery, this focus on physical function doesnot meet all of the patient’s needs once they tran-sition to the community. Returning to work andmaintaining occupational, family, social and rec-reational roles remain unaddressed issues formany patients.
5,11
After return home, social inter-actions are further complicated by an uncouplingof self-identity, personal expectations and physicalability.
6,15
As survivors recover from stroke, theyneed to reconcile changes in their bodies with theirexpectations for role engagement.
16
Both physicalcapacity and self-identity change rapidly over timeduring stroke recovery, making it difficult tomatch a stroke survivor’s expectations for roleengagement with their physical status.
17
In orderto enhance rehabilitation it is necessary to focuson social engagement and identify changing needsduring the process of community reintegrationfrom the patients’ perspective.Little longitudinal work has documented ongo-ing recovery from the patient’s perspective oncethey return to the community. As a result, under-standing how the needs of stroke survivors changeover time during the process of community reinte-gration is limited. A longitudinal, patient-centredinvestigation is warranted to identify the goals,challenges and needs of patients as they re-estab-lish themselves in their communities. The purposeof this study was to examine this process of community reintegration after stroke from thepatient’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 derivedfrom interaction with others. Participants wereconsidered actors who continually adjusted theirbehaviour based on their interpretation of interac-tions with others.
18
Participants are believed tohave the means to control their actions, althoughthey may not always use this ability.
19
Symbolicinteractionism is a complex and broad sociologicaltheory; however, in this study the authors focusedon meaning derived from interaction.Grounded theory was selected as an inductiveapproach to provide insight into the patients’ per-spectives and to generate theory that is groundedin the data collected from the field.
20,21
Groundedtheory methodology, as described by Corbin andStrauss,
19
was originally designed to study pro-cesses. It was used here to provide insight intothe patients’ perspectives and to facilitate under-standing of the experiences of stroke survivorsover the first year post stroke rehabilitation.
22,23
Community reintegration is a complex process andcannot be readily measured by quantitative means.Understanding a patient’s experience of stroke isessential to develop effective and appropriatestrategies to facilitate recovery and promote com-munity reintegration.
15
A literature review wasconducted to enhance sensitivity to relevantissues and research, and to guide development of the research question. Grounded theory guided byCorbin and Strauss methodology also involvessystematic data collection and analysis, includingtheoretical sampling, saturation and constantcomparison.
Sampling
Participants were recruited from two inpatientrehabilitation facilities between 2007 and 2008.Participants were sampled from an ongoing ran-domized control trial investigating the effect of physical therapy intervention on physical capacity1046
JP Wood 
et al.
 
and mobility function following stroke. From thislarger 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 otherpeople, 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 StateExamination,
25
were discharged home and hadadequate verbal communication (i.e. without evi-dence of receptive or expressive aphasia). Patientsdischarged to long-term care and those whoreported serious comorbidities or unstable medicalconditions were excluded. Of all patients enteredin stroke rehabilitation at these facilities, physio-therapists actively working with patients identifiedpotential participants who met the inclusion andexclusion criteria. These patients were referred toan on-site research assistant if interested inparticipating.The research assistant formally screened eachpotential participant, explained the study proce-dures and obtained written informed consent.This study was approved by The University of Western Ontario Health Sciences ResearchEthics Board and the research committees of thetwo 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 weremodified throughout data collection, whichallowed for exploration of emerging themesraised by participants.
22
Questions invited partici-pants to describe their experience of recoveringfrom stroke and to provide insight into the facili-tators 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 theparticipants. Participants were interviewed on fiveoccasions; in the hospital (predischarge) and intheir homes at two weeks, three months, sixmonths and one year post rehabilitation. Data col-lection continued until saturation was achievedand 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 andpost-interview memoing were completed todescribe context, environment and other relevantobservations during the interviews. These noteswere used primarily to corroborate data extractedfrom the interviews.
Data analysis
Audiotapes of interviews were transcribed ver-batim. NVIV07 (QSR International, Doncaster,Victoria, Australia) facilitated data managementand analysis. Guided by methods described byCorbin and Strauss, open, axial and selectivecoding were used to analyse the data.
19,22
Opencoding involved reading the transcripts line-by-line and labelling all important information.Axial coding explored the relationships betweenopen codes, to create categories by linking opencodes that shared a common theme. Selectivecoding identified a core category that was centralto the phenomenon and identified a longitudinalstoryline. Categories were validated by returningto the data and obtaining direct quotations fromparticipants.All transcripts were coded by the first author.One other investigator (MM) independentlyreviewed five transcripts as the coding schemedeveloped. The research team met weekly to dis-cuss ongoing data collection, analysis and inter-pretation. Queries and disagreements werereconciled by returning to the transcripts.Consensus was reached at every stage of analysis.
Results
The sample (
n
¼
10) included four women andsix men between the ages of 31 and 79. All wereright hand dominant, had sustained an ischaemicstroke resulting in a left-sided hemiparesis.Participants included 8 Caucasians, 1 East Indian
‘Getting back to real living’ 
1047

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