Social identity and stroke: they don't make me feel like

EMPIRICAL STUDIES

doi: 10.1111/j.1471-6712.2012.01086.x

Social identity and stroke: ‘they don’t make me feel like, there’s something wrong with me’ Sharon Anderson MEd, MSc (Doctoral Student)1 and Kyle Whitfield PhD (Associate Professor)2 1

Social Support Research Program, Suite 700 University Terrace, University of Alberta, Edmonton, AB, Canada and 2Faculty of Extension, School of Public Health, University of Alberta, Edmonton, AB, Canada

Scand J Caring Sci; 2013; 27; 820–830 Social identity and stroke: ‘they don’t make me feel like, there’s something wrong with me’ Over 85% of the people survive stroke; and of those, over 80% are discharged to the community. However, the majority do not recover completely. Loss of identity is a commonly reported experience after stroke. Studies focus on the individual survivors’ use of their own cognitive resources to adapt to change, rather than examining the effects of social interactions on stroke survivors’ identities. Social relationships are the foundation upon which survivors rebuild skills to engage with the world, yet little is known about the ways in which families, friends and neighbours provide a context for the recreation of a sense of self and activities after stroke. This article draws on situational analysis grounded theory analysis of in-depth individual interviews with nine middle-aged survivors of stroke. In situational analysis, the original grounded theory methods proposed by Glaser and Strauss are used; however, the situational context, and how environments and relationships influence actions, is explicitly analysed. Our objective was to understand the ways in which fam-

Introduction Organised stroke care including: advances in knowledge of the brain and neuroplasticity, emergency treatment with tPA, dedicated stroke care units and early and intensive rehabilitation have remarkably improved stroke outcomes (1). Over 85% of the people survive stroke; and of those, over 80% are discharged back to homes in the community (2). However, the majority (75%) do not recover completely (3). The social and psychological effects of the sudden transition from being able-bodied to disabled are extensively chronicled in the stroke

Correspondence to: Sharon Anderson, Social Support Research Program, Suite 700 University Terrace, University of Alberta, Edmonton, AB T6G 2G3, Canada. E-mail: [email protected]

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ily, social, and community resources might enhance stroke survivors’ participation in personally meaningful activities over the long term. The qualitative accounts of these survivors reveal how social support helped them maintain or more importantly regain a position in society. Following any life-changing event, people’s sense of self is fluid. A relevant social position entitles stroke survivors to become actively involved in setting their own goals and maintaining a positive identity. However, as these participants attested, stroke impaired their social position and resources to reject an imposed social position. It was difficult for these survivors to construct a valued social identity without the support of other people. Future studies should explore the consequences of social interactions with others and how social attitudes about stroke disability affects individual’s activity options, professional practice, and ultimately development of a positive poststroke identity. Keywords: stroke, community Integration, grounded theory, situational analysis, social identity, social positioning, stigma. Submitted 5 January 2012, Accepted 9 July 2012

literature. Survivors cope with a wide range of physical, psychological, social and sexual impairments (4–6), and up to 75% of the survivors require assistance with some activities of daily living (7), and over half of survivors discharged from inpatient rehabilitation programmes could not live at home without around the clock care (8, 9). Within 6 months of discharge from inpatient rehabilitation, over half of stroke survivors participate in few meaningful activities (9–11), 25% do not leave their homes (8, 9, 11), and many become increasingly isolated from all but immediate family members (12–14). Even survivors of small stroke may find they can’t balance a cheque book or function adequately in their prestroke employment (14). Anxiety and depression rates are high, on average about 33%, but over 70% in some studies (15–17). The majority of stroke survivors, including those with little visible functional impairment (18–20) and rehabilitation graduates (13, 21, 22), report decreased

© 2012 The Authors Scandinavian Journal of Caring Sciences © 2012 Nordic College of Caring Science

They don’t make me feel like, there’s something wrong with me quality of life. Both stroke survivors and their families note that pre-stroke social networks seem to dissolve, leaving them with a restricted support network of family and sometimes close friends (23–25). The dominant theme in the qualitative stroke literature is the effect of impairments on identity. Survivors lose their taken for granted identity due to: (i) loss of control; (ii) uncertainty about the future; and (iii) social isolation caused by curtailed physical activities and social interactions (5, 6, 26, 27). In these studies, stroke survivors use three approaches to manage identity and to regroup: (i) struggle to preserve prestroke identity through physical functioning and engagement in similar activities (2, 28, 29); (ii) accept impairments, then adapt by establishing a new postdiagnosis identity (4, 30–32); or (iii) classify disability as an attribute of life’s usual evolution thereby normalising it as part of ageing or a difficult life (33, 34). Essentially, the impairments and functional limitations cause a discrepancy between self-identity and social identity. For these theorists, the disabled person is challenged to adapt; social interactions and social environment are either unproblematic or taken for granted. This focuses on individual stroke survivors’ use of their own cognitive resources to adapt to change, rather than examining the effects of social interactions and social environments on stroke survivors’ view of themselves (4, 6, 35–38). Yet, personal identity is developed within social transactions where self-perceptions and possible identities are negotiated with others (36–40). Nordenfelt’s (41) dignity of personal identity theory and positioning theory (42, 43) come closest to describing how social relationships might transform identity after sudden onset disability. Individual dignity is a functional composite of recognition and rejection in our inter-subjective relationships (41). Positive patterns of recognition allow the individual to develop the self-esteem, self-confidence and selfrespect to advance identity formation. Conversely, exclusion, marginalization, disrespect or slight can violate sense of self. A valued social identity is most at risk when individuals don’t have the resources to protect their autonomy and resist exclusionary positioning (36, 38–41). Positioning theory has been used to understand the effect of communications in shaping individual, institutional and cultural positions (42, 43). A position is a referential location that emerges in relation to the social forces within each context and the storylines in the discourses of the people communicating (42). Positions are made available to individuals in discursive interactions through: (i) the persons rights and obligations, as they engage in performing a variety of actions; (ii) the local institutional order, through which rights and duties to ascribe or resist positions are distributed; (iii) the local moral order, the components of which make up the various discursive narratives and storylines; and (iv) public and private actions, from which the local community ascribes meaning thus determining its place in the storyline (43).

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Social relationships are the foundation upon which survivors rebuild skills to engage with the world (4, 21– 24, 27, 34), yet little is known about the ways, in which families, friends and neighbours in survivors’ communities provide a context for the recreation of a sense of self, roles and activities after stroke (21, 33). In times of change or crisis, individuals depend on resources they possess or can access from family, friends, community networks, institutions and governments (28, 38–40, 44, 45). Our particular research objective was to understand the ways, in which family, social and community resources might enhance stroke survivors’ participation in personally meaningful activities over the long term. The present research highlights the important role that social positioning and respectful social relationships can play in developing a positive poststroke identity and developing the morale to resume meaningful activities despite impairments.

Method This article draws on grounded theory research (46, 47) with nine stroke survivors, aged 53–64, as they discussed the facilitators and barriers to resuming activities poststroke. To make implicit belief systems explicit, grounded theory develops themes inductively from participants. We wanted to understand the ways, in which the individual and his or her environmental contexts interacted to prevent or help them resume their lives after stroke. Clarke (46) developed the situational analysis method to clarify exactly how the multiple discourses, actions and elements in the situation could be integrated into grounded theory. Rather than explaining variation away, Clarke assumes there are ‘differences and multiplicities’ that researchers need to map and represent (46: 19). In other words, we did not use a particular theory to predetermine what survivors might consider important about stroke, impairment or resuming activities. We waited for them to evolve from the interviews. After obtaining ethical approval from the appropriate university ethics committee, participants were recruited through posters at stroke clinics (secondary stroke prevention, rehabilitation) and stroke survivor/brain injury associations. Stroke survivors provided written consent. Because increasing impairment is often related to inactivity, purposive sampling (46, 47) was used to recruit mild, moderate and severe stroke survivors. Additional inclusion criteria were 50–70 years of age, residing in their own homes in an urban area (not in long-term care) and able to communicate in a face-to-face interview. This age range was selected to capture the leading edge of the baby boom population expected to swell stroke incidence. Two males were excluded, one had severe aphasia (which precluded minimal interviewing) and the other exceeded the upper age limit (72 years of age).


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S. Anderson, K. Whitfield

Study participants Six men and three women were interviewed. Names are pseudonyms, selected to correspond alphabetically to interview number. Three men (Evan, Gord, Harry) had mild, left-brain ischaemic stroke with no visible physical impairments. Although not obvious, all claimed they continued to struggle with aphasia. Two, Evan and Harry, were admitted to inpatient rehabilitation. Evan was married and lived with his wife. He was discharged home after 10 days in hospital, and believed that he was admitted to rehabilitation because his wife persisted with daily calls to the rehabilitation hospital requesting services. He said he planned on taking a university course, as a route to return to work. Harry was single. He believed he was admitted to hospital and then rehabilitation because he lived alone. Gord was discharged home after 5 hours in the emergency department. Gord was separated and had three children living at home. Gord and Harry returned to their prestroke occupations, but both said their relationships with others at work became problematic after stroke. Two women (Barb, Cari) and one man (Irv) had moderately disabling strokes with some visible weakness on the right side. All were able to communicate well, but their aphasia was noticeable. All were married and lived with their spouses. Both women had been employed in demanding administrative positions; they were also marathon runners, and they identified running as the activity they preferred to resume. Barb returned to golf and Cari volunteered at her previous employment. Irv said he had returned to all prestroke activities, except paid employment. Two men (Dave and Fred) and one woman (Jill) had severe strokes. All of these participants said they had severe left-sided neglect and hemiparesis. Fred and Jill lived with their spouses; Dave was divorced and lived alone. Dave recently became a member of his condominium board; Fred, owner of a hunting and fishing camp, resumed fishing. Jill attended a fitness centre for people with disabilities and church with her son and granddaughter. Demographic information, length of hospitalisation/rehabilitation, participants’ description of their impairments and selected resumed and nonresumed activities are provided in Table 1.

received from people. ‘Can you tell me about one activity that you have continued to do or resumed doing after the stroke and one activity you might like to do but haven’t started to do again?’, ‘What do you think helped you to do (activity) again?’, ‘Can you tell me how people [family, friends, neighbours or professionals] played a role in your resuming (not resuming) activity?’ ‘How was that helpful?’ ‘Would you have preferred it to be different?’ Interview details and impressions were recorded in field notes. The interviews were digitally recorded after receiving verbal and written consent and transcribed verbatim.

Data analysis The grounded theory methodology, situational analysis (46) was used to analyse data (participant interviews, researchers’ field notes). Adele Clarke developed the situational analysis method to clarify exactly how the multiple discourses, actions and elements in the situation could be integrated into grounded theory. Situational analysis (46) uses the same grounded theory analysis methods originally proposed by Glaser and Strauss (47); however, relationships at all levels of influence are mapped and analysed. Rather than explaining away variation, Clarke assumes that researchers must explicitly explore the ‘differences and multiplicities’ that affect actions (46: 19). Separately, the authors generated open and selective codes from interviews, field notes and maps. Then, we discussed how the ‘human elements’ (e.g. individuals, groups, organizations and institutions), the ‘nonhuman elements (e.g. accessibility, environmental context) and ‘discursive constructions’ (e.g. an ageing population, stroke, as disease of the old) were identified with Clarke’s sensitising question: ‘How do these conditions appear— make themselves felt as consequential—inside the empirical situation?’ (46: 72). Similar concepts were categorised into selective codes, as the like dimensions were identified. These were constantly compared and refined into theoretical codes using Scott and Howell’s (48) conditional relationship guide and reflective coding matrix. The first and second author agreed on the selective and final theoretical codes. After interviews eight and nine, one with a man with mild stroke and the other with a woman with severe stroke no new codes were identified, the authors agreed that saturation had been reached (46, 47).

Data collection

Findings

Qualitative one-hour research interviews were conducted by the first author in people’s homes or a nearby location of participants’ choice (e.g. a local coffee shop). Participants were asked to describe their experience of resuming activities poststroke and having to give up activities after they returned home. The questions, guided by a semistructured interview process, probed for assistance

Every participant in this study stated that impairments from stroke changed the activities they could do. The change from a busy life to forced inactivity was personally shocking: ‘You go from, I mean from doing everything to just sitting there kind of you know, I’m not able to do anything’ (Barb, age 53). Mild stroke survivors asserted that any difference from their prestroke capacity



Evan

Gord

Harry

Barb

Cari

Irv

Dave

Fred

Jill

Mild

Mild

Mild

Moderate

Moderate

Moderate

Severe

Severe

Severe

59

61

58

64

53

53

59

58

59

Age

F

M

M

M

F

F

M

M

M

Sex

November, 2007

November, 2004

March, 2005

November, 2007

December, 2007

January, 2006

February, 2007

March, 2008

June, 2003

Date of stroke

Names are assigned to participants/not their own.

a

Participant

Self-rated severity of stroke

Protein C Clotting disorder

Haemorrhagic stroke Smoker/high blood pressure

Haemorrhagic stroke High blood pressure Overweight

Elevated Coumadin (INR 9.3)

Not known

Carotid artery dissection

Not known

Patent foramen ovale

Not known

Cause of Stroke

12-month inpatient slow stream rehabilitation

12-month inpatient slow stream rehabilitation

3-month acute care, 3-month inpatient rehabilitation, 3-month slow stream inpatient rehabilitation

4-week inpatient rehabilitation

6-week inpatient rehabilitation, 6month outpatient rehabilitation, 2week constraint therapy 5-week inpatient rehabilitation

No inpatient rehabilitation, 8 sessions with psychology resident 4 weeks inpatient rehabilitation

4 weeks inpatient rehabilitation

Type and length of inpatient rehabilitation

Walks 500 metres, up and down 14 stairs with quad cane and AFO, left arm is spastic, left-sided neglect, some memory loss Walks with either AFO or WalkAide and cane, left arm is spastic, severe fatigue, left-sided neglect, some memory loss

Has some movement of fingers in right hand, walks with AFO but significant spasticity in right foot, aphasia Able to do everything but slower, slight right hand weakness and aphasia, works part time for family Walks 100 yards with quad cane and AFO/sling for left arm, left-sided neglect, 3 different meds to control seizures

No physical disability, mild aphasia, problems multitasking Some memory loss, slight aphasia, no physical disability, fatigue, has returned to work Mild aphasia, emotionalism, loss of sense of humour, works full time Right arm affected, right leg slightly affected but able to run, mild aphasia, memory slightly affected

Self-described effects of stroke

Fishing

Going to church

No

Resumed “everything but slowly” Condo board

Reading

Golf

Work

Everything but work Work

Activity Resumed

No

No

Yes

Yes

Yes

Yes

Yes

Yes

Able to drive

Swimming

Exercise classes: Fun and Fitnessa Note: Class was cancelled Driving

Work

Running

Social Relationships Running

Social activities

Work

Activity Not Resumed

Table 1 Summary of Participant demographic information, length of hospitaliation/rehabilitation, participants’ description of their impairments and selected resumed and nonresumed activities

They don’t make me feel like, there’s something wrong with me 823

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limited their participation in usual taken for granted daily activities. They all gave examples of loss of minimal facility, like quickly answering a question or easily preparing a written report.

Loss of confidence in ordinary activities These survivors all noted that they lost confidence, and at times were unsure of how they might cope in commonplace situations. As this quote from Gord illustrates, they connected recovery to recapture their self-image, ‘I think it’s a real big blow to my self-esteem, which is connected to recovery (Gord)’. When discharged home, even the most able participants struggled to overcome fear of leaving their own homes. To illustrate, Barb could drive, but she was afraid to go to the shopping centre because she felt vulnerable, ‘I wanted to go out, but I was kind of scared. I could be a victim very easily. Because I can see me walking with a cane and I can’t really defend myself’. Similarly, Dave acknowledged that he wasn’t sure if he could manage in an emergency. Just being able to go out, the first … year or so, as I recall and I’ve been trying to put into words, the hardest part was adapting to change. Um, being in a fog, being afraid of change, (pause) I wasn’t prepared to go out because I, myself, wasn’t, (pause…) prepared to adapt very quickly. So it’s not other people’s opinions I was worried about, it was my own ability to cope(Dave, severe stroke, age 58). All the participants stressed they were motivated to do what they could to recover, but said they were often unsure about how to proceed or were forced to wait for assessments or therapy and in the process lost their confidence in their ability to participate in their ordinary prestroke activities.

Fighting for a valued position poststroke They were surprised by how interactions with other people changed after the stroke. They had to constantly negotiate with themselves and others about whether a person with these particular impairments might be capable of this particular activity. These stroke survivors acknowledged they were very vulnerable to how they were treated and positioned by other people. They could position themselves as one type of person, but other people could undermine their position by scrutinising their behaviour to determine capabilities such as talking down to them or ignoring them. Jill, a health professional prestroke, insisted that depersonalising interactions were common poststroke, and that she had to really fight against feelings of inferiority induced by this positioning. And you get treated like an idiot once you had a stroke. You’re ignored as a person, by the medical people, I mean you get medical care, but they don’t

talk to you like you know anything. And you lose all your friends, who you thought were your friends. You fell off the face of the earth it seems. I don’t know why, but it’s one of the hardest things I had to deal with. I was in the hospital and I don’t think half of them came to see me, ever. It’s too close to home for them, I think. I mean it could happen to one person, it might happen to them, and I think that’s scary(Jill, severe stroke, age 59). Likewise, Dave believed that people avoided relationships with him because of his physical and cognitive impairments. In his experience, people had preconceived stereotyped ideas about the capabilities of people with disabilities. He compared the stigma of disability to losing reputation. If you don’t speak quickly, you’re perceived to be slow. And if you’re not quick people aren’t going to want to be around you. Not everybody sees you as a person with something to give. They’re going to look at one part of you and that’s the damaged frail part, too frail maybe to have a relationship with. So it’s very hard, it’s like your reputation. Once your reputation is damaged, you’ll never get that back. So, once your health reputation is damaged, if somebody has known you before, it’s very difficult to get that back. It’s like going back to work at your old job, it’s going to be hard to get back your old job, even if you can, you have to prove yourself(Dave, severe stroke, age 58). Participants believed they were vulnerable to any rejection of their goals, because they did not have the resources or a position to confront the other person’s assessments. All participants provided instances where someone assumed they were incapable and stopped them from participating in activities that they thought were feasible. For example, Cari was volunteering at her former workplace and believed she was able to update the database as she had before stroke, but was prevented from doing so because ‘only employees’ were allowed access to the database. She thought this was an excuse that coworkers did not think she was competent to complete the work. Fred related how he used humour to achieve individual recognition of his capability and break the stereotyping, ‘Every day the therapists would all ask me if I knew my name. Finally, I said, ‘Jennifer, I am going to tell you today, but after this you have to remember it yourself’.

‘Personality’ for negotiating control Six participants believed persistence, hard work, determination, optimism, bullheadedness and adaptability were keys to negotiating for control of their situation. They stressed that being fearful to ask, timid or being reluctant to adapt were barriers to resuming activities and creating


They don’t make me feel like, there’s something wrong with me a position for themselves. ‘You have to need personality. I mean if you’re a little bit timid before the stroke, it is not going to help it at all. You’ve got to really confront it head on and stuff like that’ (Harry, mild stroke, age 58). However, all of these survivors found that stroke impairments and other people’s perceptions of their impairments made it difficult to gain control as they had prestroke. If you appear [that] you can take care of yourself, then people normally will give more credence to opinion. Just normal, but if you are ill or unstable, whether it’s family problems or whatever, then they’re going to wonder about your ability to take care of your own self or family and therefore whether your opinion is going to be tainted(Dave, severe stroke, age 58).

Unable to position their goals as a priority Three quarters of the participants believed that professionals prioritised institutional goals, like regaining basic activities of daily living or preventing falls, over their goals. Most of these participants had long-term complex activity goals like running or returning to work in mind and wanted to continue to work at activities on their own, but learned that in rehabilitation, professionals worked to remediate functional impairments at prescribed times. These participants were quite critical about the lack of recognition of their goals. Evan said he received noncommittal responses whenever he talked about his goal of returning to work. Irv explained that although he could argue, in most instances, there was little recourse but to ‘go along with’ others wishes. Well, I was very disappointed in their physical therapy. First of all, they didn’t want to let me use a treadmill because no one would be there to supervise me. No, they’re more interested in covering their butts than making me better. You know, (sigh) they didn’t want to let me use any of the equipment, unless they were there, and I said, ‘What are we here for?’ [They said], ‘What if you fall?’ ‘Oh,’ I said, ‘If I fall, I’ll get up’(Irv, moderate stroke, age 64). Several participants (Barb, Jill, Dave, Evan, Gord, Irv) explicitly stated that their stroke had taken away their power and position to get people to listen to their viewpoint. Dave found his social capital has improved as he has regained some activities and others recognise his competence, but as this quote illustrates, he still believes he has less power than he did prestroke, ‘No, they don’t always listen, so I have to swallow my pride, you know it’s like I don’t always get what I want anymore’.

Someone who respects and supports As they tried to re-establish their social status and social position, these survivors believed they required support

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from someone more powerful. They could gear up to convince others of what they needed, but they discovered that impairments made it difficult to make their case or the other person in the interaction did not take them as seriously as they might have prestroke. Dave noted that being given the opportunity to resume activities was critical to developing a positive sense of self, ‘Well I [was] nonsociety and now I’m contributing to society. I feel like I’m using my expertise to some degree and contributing because for the first couple of years, I wasn’t feeling useful’ (Dave, severe stroke, age 58). He explained that for the first 2 years, personal care workers did all of his personal care, but one lady spent over an hour showing him how to put socks on with one hand. ‘She thought I could do it. She made me realise my arm wasn’t the problem, I needed to think differently. Everyone spoke about situations where someone believed in them and provided emotional and practical support that increased their control. For most, these survivors gave families credit for positioning them as capable. Evan, Fred and Jill believed that they would not have been accepted for rehabilitation without their spouses’ advocacy. The most disabled participants, Jill and Fred, provided numerous examples of how family support bolstered their confidence to engage in activities and enhanced efficacy. Fred credited his remarkable progress to family support. When discharged home after a year at inpatient rehabilitation, he had severe left-sided neglect, was incontinent, confined to a wheelchair, and required a two person transfer. As he says, ‘Well that’s then we started working pretty hard’. His family bought him a recumbent bike, ‘I started with pushing it, [but] we couldn’t keep my foot on it so [wife] put the Velcro on my shoe and I get the foot put it in the strap’. Fred’s progress was slow, but steady, ‘the first few months, I barely could go half a kilometre. I thought well, I’m getting good. Now I do 20’. This translated into walking, ‘I walk with a cane. I go a lot of places, shopping to IGA, restaurants. I don’t recall the last time I was even in a wheelchair’. He stressed that his family continues to introduce him to activities he had not done prestroke, like swimming and reading. I’m so much different than when I came home. The best thing I do is reading because I didn’t read before. Well, the Farmer’s Almanac and Bear Attacks. I couldn’t read a line this long [poststroke] and now a newspaper and now I’m about, just about finish my 66th, I’ll finish it on Monday, my 66th book. Oh, the big thing is a family and friends. I mean the government workers and all that are very important, but family and friends are the biggest part of it(Fred, severe stroke, age 61). Barb made a direct link between how friends positioned her as the person she always had been, rather


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than as disabled and different to her self-efficacy to participate in activities. Her friends reinforced her capability, ‘And like I said, my good friends, once I got out [of rehabilitation], they never said you can’t do something. You know, they said ‘Okay, let’s do that’ (Barb). Later in the interview, she stressed how friends re-affirmed her usual identity, rather than impairments and differences. Ah, but you know it’s my friends. They don’t look at me like there’s something different. When I complained about, you know, not being able to hit the [golf] ball, she says, ‘Boy, you’re just like the rest of us’. You know so they, they’re very encouraging, but they don’t make me feel like there’s something wrong with me(Barb, moderate stroke, age 53).

Cultural context: beliefs about disability and age The thread of the stigma of being disabled by stroke and not wanting to be associated with impairment and disability wove through each of the interviews. Barb commented, ‘I just found like I, it was not supposed to be me. I’m not like this… I’m not one of those, I’m not like those people’ (Barb). When asked to elaborate, she added, ‘Handicapped, I guess, or you know, mostly they were like older’. These participants stressed that they were constantly fighting stereotypes about what people with stroke could do and a general stigma of stroke disability. All participants provided examples of overprotective, reproachful or judgmental attitudes of people who focused exclusively on what they couldn’t do. Some described family members or friends who innocently discouraged self-efficacy by doing everything for them. Barb used the example of her dad ‘even buttering my toast, he wouldn’t let me do anything’. However, participants were demoralised when people depreciated their efforts or ignored them. Going back to my kids again, and society, you know, we’re just moving so quick, and with respect to my son, who is a good kid, but he is on Facebook, computers and I can’t process the information as quick as he would like me to. You can’t keep up with people and they sort of don’t want to be your friend, if you can’t keep up(Evan, mild stroke, age 59). Participants indicated there was a stigma to stroke disability that they didn’t want to be associated with. Irv stressed that most people are to blame for their stroke. He thought that how people with stroke are treated related to their personal responsibility for stroke. But I sort of think that people that have strokes are generally smokers, or they eat too much greasy food, or you know, didn’t live a healthy lifestyle, or all of the above and maybe therefore, they don’t get as much or have people feel sorry for them. Maybe, that’s why they don’t get as much as they should (Irv, moderate stroke, age 64).

Irv and Evan connected ageism to the negative attitudes towards stroke disability. Both thought that some stroke survivors just accepted the social discourse that survivors were older and little could be done for stroke. They believed that was why some survivors weren’t motivated to work hard and others assumed that they should just accept that disability was part of ageing. But, I think that people tend to think that once you had a stroke, ‘What is the use? I’m not accepting the disability. I want to be one with the best recovery, not the lesser third. I tend to think that generally speaking, the more advanced stage you are—see I’m approaching the magic 65—everybody thinks that’s when you quit’. (Irv, moderate stroke, age 64). Participants distanced themselves from stroke disability by declaring they did not smoke, stressing they worked hard to recover, and describing how they hid impairments. All but two participants (Dave and Fred) made it very clear that their stroke was not caused by their lifestyle choices. Evan gave a typical response; he remarked that he did not smoke or drink alcohol, and he was not overweight: ‘Even when my family physician knew about me, he came in [to the hospital] and he was surprised’. Several gave examples of how they avoided being seen as disabled, ‘I say only what I have to, so they don’t know I have trouble speaking’ (Evan); ‘I tuck this arm in my pocket’ (Barb) or ‘My other supervisor knows I had a health issue, but even today, I don’t think she even knows that I had a stroke’ (Harry).

Discussion One of the most striking findings in this research was how participants lost their social position at the time of their stroke. It was also clear that 1–6 years poststroke, these survivors were still working at regaining their lost social position. While they recognised that a strong personal sense of self assisted with the process, these survivors believed that it was critical to have respect and support from other people to maintain their claim to a valued position in society. Mona Bendz (38, 49) noted stroke survivors’ loss of position and struggle to regain their place in the social hierarchy in stroke rehabilitation. In her analysis, rehabilitation was a site of struggle, where survivors negotiated with health professionals over the meaning of the social world and their position in it (42, 43). Other studies have noted that identity is most threatened in health and social care service use because of overprotection, professional dominance and lack of autonomy (14, 33, 34, 37, 50). The survivors in our study revealed that negotiations to regain their lost ‘reputation’ continue after discharge into the community. For these participants, respectful recognition in social interactions protected their identity and was a significant factor in their ability to approach the world and


They don’t make me feel like, there’s something wrong with me re-engage in activities. In our society, social inequality, ageism and ableism are closely associated with lack of respect because respect and recognition are associated with a strong social and economic position (41, 50). A social position is always constructed in co-operation with others (42, 43); therefore, the sudden loss of social position leaves stroke survivors vulnerable to how others position them (36, 38, 49). A stroke survivor with aphasia, cognitive impairment or physical limitations can innocently be treated as incapable or as a burden on their care-partner and family (31, 34, 37, 51–53). When people are able-bodied, they cannot imagine how impairments and disability can become the master status that threatens all other social positions (52, 53). ‘Master status’ is the primary characteristic or set of characteristics by which an individual is socially identified (54). In interactions with other people because disability becomes the salient reference, ‘identity and self-definition becomes the driving influence in life’ (38, 55, 57). Survivors in our research emphasised that being characterised by their stroke impairments made it difficult to re-establish normal relationships with others. Many stroke researchers have asserted that loss of functional abilities and roles results in a loss of identity (22, 26, 30, 55). The inductive study of these stroke survivors’ accounts using of situational analysis (46) questions whether identity loss is individual or socially imposed or socially constructed process. Situational analysis is methodology lens designed to explicate social processes (46). These survivors’ sense of self was developed interactively within the culture of the environmental context and participating in activities in the company of others. Personal and social identities consist of four main components: (i) an internal identity standard that defines who one is as a person, in a role or as group member; (ii) social behaviour in the social context; (iii) self-relevant perceptions of the reflected appraisals of others or how one believes he or she appears in the situation; and (iv) comparator, the comparison between the internal identity standard and external appraisals (27,56– 58).These participants asserted that a strong personal identity standard and ability to assert oneself were necessary components to withstand the negative social positioning that accompanies impairment from stroke. But they also suggested that the third component of identity, reflected appraisals by others or other’s social positioning of them played an equally significant role in maintaining their self-esteem and sense of self (42, 49). Following any life-changing event, people’s sense of self is fluid (39–42, 50–54). The qualitative accounts of these survivors reveal how social support helped them maintain or regain a position in society. Respect and a relevant social position entitles stroke survivors to become actively involved in setting their own goals and maintaining a positive personal and social identity (41,

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42, 50, 51, 53), but as these participants attested, stroke impaired their social position and resources to reject an imposed social position or social identity. Others have noted that it is difficult for stroke survivors to construct a valued social identity without the support of other people (21, 37, 38, 49). Being part of a social group, treated as ‘us’ rather than as the other, provides individuals with a sense of belonging and purpose (27,40–43,50–53,56– 58). Indeed, social support can help people with stigmatising illness to reject negative stereotypes and construct more positive views of themselves and their potential (27,50–54). Culturally, impairments and disability are still stigmatised (59, 60). Neurological impairments, in particular, can lead to negative social positioning (27, 51, 53, 59). These participants speculated that because stroke is positioned as a disease caused by individual inactivity and indulgence, they were offered fewer opportunities. Critical health promotion theorists recognise that prevention campaigns that position disability as abnormal and preventable can stigmatise individual behaviour and vilify people who become ill or impaired (8, 60, 61). This has many implications for health and community organisations that aim to support people after a stroke. In stroke, the priority for health promotion and medical care is to prevent or cure disability, rather than to advocate for civil rights of stroke survivors. While most people who have had a stroke would likely agree that the best stroke is a prevented one, they have to contend with the psychosocial consequences of a culture that stigmatises stroke disability – pity, fear and difficult social interactions. Given that three-quarters of people who have a stroke will have to live with some ongoing limitation, health professionals and stroke organizations need to adopt a broader vision that destigmatises stroke disability and supports stroke survivors to live with impairments. There is a wealth of qualitative and quantitative research that emphasises the importance of social processes in stroke recovery (12,23,24,27,34,38). Professionals should strategise with stroke survivors about ways to enhance social interactions and social support. Most importantly, health professionals need to advocate for community inclusion and social support in communities.

Limitations This study is limited by the small sample of relatively young stroke survivors who contacted the researcher through community advertising. As such, these participants are likely more involved in community activities than usual (10). However, if these very socially endowed survivors had to fight to maintain a social position, future research might specifically follow a more representative group of survivors to understand how support networks help survivors to maintain a positive poststroke identity


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(27). There are implications for this study. Looming on the horizon is a large population of baby boomers like the early adopters of stroke in this study that will likely result in increasing numbers of people with stroke disability. Assessment of individual impairments and individual responses to stroke continue to abound although community studies do emphasise that social networks and social capital are far better predictors of long-term wellbeing (21,27,45). In future research, it would be valuable to understand the effects of social interactions and social positioning on development of a positive poststroke identity.

Conclusion The delivery of poststroke services is based on the understanding that individuals themselves are responsible for defining their own goals and activities although support from others is a necessary component for many survivors. Administrators of health promotion programmes now understand that social situations, settings and structures shape individual behaviour and choices (59, 60). However, research of how stroke survivors’ activity choices and identity are shaped from a socio-ecological perspective has lagged. Future studies should explore the consequences of social interactions with others and how social attitudes about stroke disability affects individual’s

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Acknowledgement The authors wish to acknowledge the nine stroke survivors, who graciously told their stories of returning home after stroke.

Author contribution The study was a thesis research project supervised by Dr Whitfield. I conceived and designed study, did the data collection, and Dr Whitfield and I worked on the data analysis together. I drafted the initial manuscript which Dr. Whitfield has reviewed and revised.

Funding/sponsorship There was no specific funding for this project.

Ethical approval The study was approved by the University of Alberta Health Research Ethics Board, Health Panel – which reviews all non-invasive health research. The HREB reference number is PRO00000503.

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