http://informahealthcare.com/dre ISSN 0963-8288 print/ISSN 1464-5165 online Disabil Rehabil, 2014; 36(22): 1911–1917 ! 2014 Informa UK Ltd. DOI: 10.3109/09638288.2014.882416

RESEARCH PAPER

Navigating stroke care: the experiences of younger stroke survivors Euan Sadler1, Katie Daniel1, Charles D. A. Wolfe1,2, and Christopher McKevitt1,2 1

Department of Primary Care and Public Health Sciences, Division of Health and Social Care Research, King’s College London, London, United Kingdom and 2National Institute for Health Research (NIHR) Biomedical Research Centre at Guy’s and St Thomas’ NHS Foundation Trust and King’s College London, London, United Kingdom Abstract

Keywords

Purpose: Although stroke is associated with ageing, a significant proportion of strokes occur in younger people. Younger stroke survivors have experienced care available as inappropriate to their needs. However, insufficient attention has been paid to how the social context shapes their experiences of care. We investigated this question with younger stroke survivors in Greater London, UK. Method: We conducted in-depth interviews with individuals aged between 24 and 62 years. Interviews were analysed thematically, with interpretation informed by Bourdieu’s concepts of field, capital and habitus. Results: In the acute care setting it was implicit for participants that expertise and guidance was to be prioritised and largely this was reported as what was received. Individuals’ cultural capital shaped expectations to access information, but health care professionals’ symbolic capital meant they controlled its provision. After discharge, professional guidance was still looked for, but many felt it was limited or unavailable. It was here that participants’ social, cultural and economic capital became more important in experiences of care. Conclusions: The field of stroke shaped younger stroke survivors’ experiences of care. Navigating stroke care was contingent on accessing different forms of capital. Differences in access to these resources influenced longer term adjustment after stroke.

Bourdieu, experiences of care, stroke, younger adults History Received 22 January 2013 Revised 4 September 2013 Accepted 8 January 2014 Published online 28 January 2014

ä Implications for Rehabilitation 







Stroke care can be conceptualised as a temporal field of social activity and relationships which shapes variations in experiences of care among younger stroke survivors, and differences in expectations of support at different time points after stroke. On entering the field of stroke participants reported needing health care professional guidance and expertise to manage the acute event, yet difficulties accessing information in hospital limited the agency of some individuals wanting to take an active role in their recovery. After discharge from hospital variations in experiences of care among participants were more evident, with a number still seeking professional guidance, and requiring the capital and agency to navigate the field of stroke. Despite international efforts to improve the quality of acute care, effective models of community stroke care still need to be developed.

Introduction Stroke, a leading cause of disability and mortality [1], is usually thought of as a disease of older age. Yet a significant proportion of strokes occur in younger people. For example, in the United Kingdom (UK), approximately 30% of those recruited to the South London Stroke Register (SLSR) [2] and 20% to the Oxford Vascular Study [3] were under the age of 65 years at the time of first stroke. The epidemiological and symbolic associations

Address for correspondence: Dr Euan Sadler, Department of Primary Care and Public Health Sciences, Division of Health and Social Care Research, King’s College London, 7th Floor Capital House, 42 Weston Street, London SE1 3QD, United Kingdom. Tel: 020 7848 6645. Fax: 020 7848 6620. E-mail: [email protected].

between ageing and stroke have long influenced the delivery of stroke care, in the UK and other countries provided in elderly care settings [4,5]. This has been reflected in UK policy drives, with one of the first attempts to document quality indicators for stroke care published in the 2001 National Service Framework for Older People [6]. Thus, younger stroke survivors have been identified as a group that might not receive care appropriate to their specific needs, and likely to ‘‘fall through the net’’ of existing stroke service delivery [5, p. 354]. Over the last two decades there have been world-wide efforts to develop stroke care as a speciality in its own right. This has included increased recognition in policy and clinical guidelines that younger stroke survivors may have specific needs, for example, in relation to work and parenting roles, which should be addressed [7,8]. However, guidelines focusing on younger stroke survivors have been poorly implemented, and attention to the

1912

E. Sadler et al.

specific needs of this group have not been included in audits of quality of care [9]. A number of studies highlight the impact of stroke on the lives of younger stroke survivors, in terms of: identity [10]; life satisfaction [11]; social relationships or social participation [12–15]; and finances [16,17]. Other studies report that younger stroke survivors have a range of unmet needs, including: lack of information [16–19]; peer support services [18]; and support with return to work [13,16,17,20]. Fewer studies have focused on younger stroke survivors’ experiences of care after stroke. Medin et al. [13] found that younger stroke survivors perceived stroke services as mainly geared to the needs of older rather than younger people, due to the lack of available vocational support after stroke. Bendz [21, p. 215] found that while rehabilitation professionals focused on improving physical functioning, younger stroke survivors felt that their concerns related to ‘‘loss of control, fatigue and fear of relapse’’ were not considered. We aim to add to this literature focusing on experiences of care in the context of stroke services as a speciality in their own right. We draw on Bourdieu’s concepts of field, capital and habitus [22–24] to understand how younger stroke survivors’ experiences of care are shaped. In The Logic of Practice, Bourdieu describes a field as representing a boundaried social arena of activity and relationships between individuals and social groups. Bourdieu characterises a field as a ‘‘game’’ with its own boundaries and power structures, rules and values, which shape the actions of all people entering it [22]. The structures of a field influence the distribution and access to different forms of capital, defined as resources that enable individuals to negotiate their way through, and to act, within a field [22–24]. Bourdieu describes four main forms of capital: social, economic, cultural and symbolic. These refer to: informal and formal social relationships and support networks; financial assets (money, income and services); socially legitimated knowledge, skills and practices; and prestige, status and authority afforded to specific institutions or social groups within a field, respectively [22,23]. Bourdieu also discusses ‘‘embodied’’ or physical capital as a sub-category of cultural capital, pertaining to the functioning of the physical body and how this affects access to other forms of capital [25,26]. This is of relevance because physical impairment following stroke will affect an individual’s ability to draw on different forms of capital as resources to adjust to life after stroke. Habitus, relates to individuals’ agency, or their capacity to make choices and to act within a given field, which is shaped by their mental dispositions and socialised norms (e.g. related to their social class). Individuals’ habitus interacts with the constraints imposed by the structures of a field, which in turn shapes their access to different forms of capital available. Bourdieu argues that the structures of a field are temporal and dynamic, which affects the type of capital individuals can draw on [22–24]. He proposes that people mainly move in and out of familiar or ‘‘doxic’’ fields throughout their lives. However, individuals may find themselves in a new, unfamiliar or ‘‘nondoxic’’ field in which they are unsure how to act and behave or what is expected of them [22,27]. In such a context, mobilising capital may prove more difficult if others hold the cultural and symbolic capital within this new field [27]. Stroke care is typically conceptualised as following a pathway along which the patient is guided by professionals [7]. In the UK, acute stroke care is increasingly provided on a stroke unit by health care professionals as part of a specialist multidisciplinary stroke team (MDT) [28,29]. After discharge from hospital, individuals may continue to receive rehabilitation in their own home. At this point in the pathway, community stroke care is characterised by more local variability in service provision [30],

Disabil Rehabil, 2014; 36(22): 1911–1917

delivered either through a dedicated Early Supported Discharge (ESD) team, or a more generic rehabilitation team for a set period of time. We argue that stroke care can be characterised as a field of social activity and relationships, with its own boundaries and power structures. It is fundamentally a biomedical field, with services largely geared to the restoration of physical function after stroke. The diagnosis of stroke sanctions and legitimates patients’ entry into this biomedical field. It is also a temporal field with its structures and boundaries changing across the pathway. Individuals’ agency (informed by their habitus), can be thought to interact with the changing structures of the temporal field of stroke, which in turn influences access to different forms of capital. Thinking about stroke as a field allows us to look at the ways in which stroke affects younger stroke survivors as agents in a social context. Contextualising experiences of care in terms of structure and agency is useful because it shows how variations in experiences of care are produced. Purpose of the study The aim of this study is to investigate how younger stroke survivors’ experiences of care are shaped by the field of stroke, and how, in navigating stroke care, individuals seek to draw on different forms of capital in adjusting to life after stroke. Finally, we draw out implications for policy and service development.

Methods Sampling framework This study was undertaken as part of a wider project investigating provision of care and developing service models for working age people with stroke in the UK. Ethical approval for the study was given by the National Research Ethics Service South East London REC 2 (Formerly St Thomas’ Hospital Research Ethics Committee) (REC reference: 06/Q0702/147). We recruited a purposive sample of younger stroke survivors, including men and women between the ages of 24 and 62 years, with different levels of disability, time post-stroke and ethnic backgrounds. The sampling framework was the SLSR a population-based stroke register of over 4000 incident stroke cases registered since 1995 and followed up at 3 months and annually thereafter [31]. The register covers a defined area of South London, which is an ethnically diverse inner city area with high levels of social deprivation. Some stroke patients may also be referred to a tertiary rehabilitation centre but since no participants recruited from the SLSR were referred to such a centre, we also recruited six individuals recently discharged from a tertiary rehabilitation unit. Data collection We conducted one-to-one semi-structured interviews as the aim of the study was to explore younger stroke survivors’ experiences of care. Interviews were mainly conducted in participants’ own homes. We developed an interview topic guide based on a previous literature review of the social consequences of stroke among younger stroke survivors [20], and piloted this with two younger adults who had had a stroke, and who were part of the study’s Advisory Group. The topic guide questions focused on experiences of acute and community stroke care, and the extent to which needs and expectations were met by services. All interviews were digitally recorded, except in the case of one participant who declined to be recorded. Hand written notes were made in this case and written up immediately after the interview. Interviews lasted between 30 and 120 min and were transcribed in full.

Navigating stroke care

DOI: 10.3109/09638288.2014.882416

Analysis We conducted a thematic analysis using the constant comparative method to look for emerging themes grounded in the interview data [32]. First, this involved three authors [K. D., E. S., C. M.] reading and re-reading all interview transcripts to identify initial codes (or categories of meaning), with the purpose of creating an index of these codes. Transcripts were coded and as new categories emerged from the raw data, subsequent changes to the index were made, leading to the creation of a final index of themes. A further discussion then took place between two authors [E.S., C.M.] to analyse and interpret emerging themes. At this point we drew on Bourdieu’s concepts of field, capital and habitus [22–24] to theorise how participants’ accounts of their experiences of care might be understood. In the next section, we discuss the results of our study. First we describe key characteristics of participants. We then discuss four main themes in relation to how younger stroke survivors’ experiences of care were shaped by the temporal biomedical field of stroke. These were: (1) health care professional as expert; (2) expectations of involvement in care; (3) social capital; and (4) variations in economic capital. We use pseudonyms in illustrative data extracts to protect the anonymity of participants (and the staff they refer to).

Results Participants Thirty one stroke survivors were interviewed (ages ranged between 24 and 62 years; time since stroke 6 weeks and 28 months) (Table 1). In 10 interviews carers also took part, reflecting interviewee preference. The vast majority of participants were admitted to a stroke unit (N ¼ 27), but a minority

1913

received hospital care on a cardiac or general medical ward. The majority (N ¼ 19) had mild or no physical disability (based on a Barthel Index Score of 18–20) at the time of interview, whereas a minority (N ¼ 6) had a moderate level of disability (Barthel Index 13–17). All six individuals recruited from the regional rehabilitation unit had significant ongoing physical impairments, and three had severe aphasia. Overall, participants were from diverse ethnic and occupational backgrounds. Just over one third (N ¼ 11) were not working prior to the stroke either due to pre-existing health problems (N ¼ 9) or inability to find work (N ¼ 2). Health care professional as expert On entering the field of stroke, there was recognition among participants that their situation demanded professional expertise. This legitimated health care professionals’ status and prestige (as a form of symbolic capital) in the field of stroke at this early stage. For example, this was apparent in one woman’s appraisal of the care she received while in hospital: I: What kind of care did you get in hospital? R: Dr Davidson, I see when I came [there]. . .Dr Davidson, he’s a stroke, he’s a stroke man. (Mrs King) Participants also articulated the need for this expertise. Medical care was rarely criticised, and largely met the needs and expectations of participants with regards to the technical management of stroke at this early stage, as another participant noted: Hospital care I was incredibly, incredibly impressed with. I never felt as though my needs weren’t being looked after, nor

Table 1. Participant characteristics. Participant Ms Taylor Ms Davies Mr Wilson Mrs Evans Mr Thomas Mrs Roberts Mrs Walker Ms Moore Mrs King Ms Watson Mr Baker Mr Harrison Mr Morgan Mr Gibson Mr Kelly Mrs Ling Mr Marshall Mr Russell Mr Mason Mr Foster Mr Adams Ms Cox Mr Stewart Mr Gray Mr Bailey Mrs Brown Mr Jones Mr Smith Mr Panetti Mrs Williams Mr Rogers 1

Time since stroke 6 months 13 months 21 months 19 months 13 months 15 months 28 months 8 months 12 months 19 months 9 months 5 months 2 months 18 months 3 months 10 months 13 months 5 months 6 months 6 weeks 5 months 11 months 8 months 9 months 7 months 13 months 6 months 4 months 5 months 2 months 2 months

Age 49 40 57 62 45 50 50 24 57 39 57 51 59 36 35 53 55 39 46 49 49 42 41 55 58 60 57 56 58 44 57

Occupation prior to stroke 1

FT daycentre worker FT carer Unable to work Retired FT council maintenance Unable to work Unable to work Student PT2 carer PT accounts administrator FT director Unable to work FT self-employed mechanic FT web programmer Unable to work FT pharmacy manager Looking for work/studying PT PT security guard Unable to work Unable to work FT courier driver FT registered nurse FT housing officer Looking for work Unable to work FT cleaner Unable to work FT tailor FT importer FT health care assistant FT Web programmer

Ethnic group3

Barthel Index score (BI)

BC BA W W W W W W W BC W W BA W W A A BC A BC A BA W A A W W A W BC W

19 20 20 20 18 19 19 20 19 16 20 13 19 20 20 19 16 20 16 19 – – – – – – 20 20 20 20 16

FT, full time; 2PT, part time; 3W, White; BC, Black Caribbean; BA, Black African; A, Asian ethnic groups.

1914

E. Sadler et al.

did I ever feel that I was being brushed out, you know, everything was considered and measured and steps were taken. (Ms Moore) Nearly one half of participants (N ¼ 14) were unable to comment on the quality of hospital care they had received as the experience was new to them and they did not know what to expect. Several spoke about ‘‘not having a standard’’ against which to assess the quality of hospital care. On entering the unfamiliar or ‘‘non-doxic’’ field of stroke [22], individuals were looking for guidance, as one woman said: Because I don’t know what I’m expecting to be honest, because I’ve been ill, I am not expecting I get ill, so I am not prepared. . .There’s no clear guidelines, to say. (Mrs Ling) After discharge from hospital, professional guidance to support further recovery and adjustment after stroke was perceived as limited. It was in this part of the field of stroke in which variations in experiences of care among younger stroke survivors became more evident. Around one third of younger stroke survivors (N ¼ 11) reported having made a good functional recovery, and were satisfied with the limited level of rehabilitation provided. However, two thirds reported that they were still looking for guidance in their physical recovery, or support with psychological, emotional or social issues, but little professional support was available. Navigating the field of community stroke care was experienced as difficult. A mismatch between patients’ expectations and providers’ focus and capacity was reflected in the accounts of eight individuals. All had made a good physical recovery, having experienced only minor stroke-related physical impairments. However, they had expected community rehabilitation to address needs for support with rehousing, transport, management of stress, emotional and interpersonal difficulties that appeared to be beyond the remit of community stroke services. Eight participants and two carers felt satisfied with the quality, but not the quantity, of community based rehabilitation provided in this part of the field of stroke. They spoke of their disappointment that rehabilitation therapy had ended, despite continuing to experience physical impairments, such as muscle weakness, balance problems, reduced mobility and communication difficulties. A common perception was that rehabilitation had come to an end due to limited funding and staff shortages. For example, one spouse carer commented on her husband’s rehabilitation ending: He’s improving definitely with the physiotherapy and the speech and language therapy, but according to them they have to wind down somewhere because of the limitation of budget and staffing and manpower and funding-those things. (Spouse carer of Mr Rogers) Furthermore, a minority of participants, all of whom were from ethnic minority backgrounds, expected they would receive physiotherapy after discharge from hospital to support them in their further physical recovery after stroke, but this had not been provided. For such individuals, this lack of perceived professional guidance was extremely distressing at a time when it was felt most needed, as one Black Caribbean man said: When you get home you don’t seem to get no care at all, you know. That’s when you need the care, I think, right after you’ve had the stroke. (Mr Foster)

Disabil Rehabil, 2014; 36(22): 1911–1917

Expectations of involvement in care Pre-existing levels of cultural capital, in terms of knowledge and skills, shaped participants’ expectations of involvement in their care. Key to this was the provision of information. On entering the field of stroke, four men (three admitted to a stroke unit and one to a general medical ward), had expected that information – a form of cultural capital – should be given to them, to allow them to play an active role in that field, so as to manage their own recovery. This included specific information about ward procedures, results of medical investigations and discharge plans. Such information was difficult to obtain when health care professionals held this form of cultural capital, but also had the legitimate authority (or symbolic capital) to provide it at this early stage in the field of stroke. For two men, the inability to access information they needed was at odds with how they had always been accustomed to taking responsibility to seek out information to make informed choices about managing their health prior to the stroke; which appeared to be part of their habitus. For example, Mr Panetti spoke about being ‘‘kept in the dark’’ by doctors about the results of his medical tests on the stroke unit. He considered that being given information about his diagnosis and future risks would empower him to be able to choose from alternative non-medical routes for secondary management, rather than only being reliant on biomedical regimes. Not being able to access this information was extremely frustrating and coloured his experience of hospital stroke care as depersonalising: I had to run after my doctor, or the doctor wasn’t on the ward to ask him about the tests and this and that. . .I want to know because I want to do certain things in order to recover properly. Unbelievable. Treated like a number. I don’t know, or a case, or something. . .It’s my body, my health. . .I wanted to approach my recovery in a different way, if I may. I started Chinese medicine, I do herbs, I do Tai Chi, I do yoga, acupuncture, you know, seeing an alternative method to recover instead of taking pills. (Mr Panetti) Once discharged from hospital, nine participants reported dissatisfaction that they were not given information about future recovery and risk of further stroke. Few reported that they had managed to actively seek out this information through alternative resources such as the internet or voluntary organisations. Mr Baker was an exception, emphasising that it was his personal responsibility to seek out information on the longterm effects of stroke, rather than relying on other people to provide this. I am firmly of the opinion, you know, one has a personal responsibility in this. You know, I can’t, I don’t necessarily see myself throwing myself on somebody else and saying, it’s your problem. It’s not. It’s my problem . . .I think so much of it is about providing information. We took the initiative and got in touch with the Stroke Association via the internet and they sent lots of information. . .and which gave us enough reassurance to think about what we are going to do in the longer term. (Mr Baker)

Social capital On entry to the field of stroke, ongoing social support provided by family and friends was identified by participants as playing a significant buffering role in coping with the impact of stroke. Over two thirds (N ¼ 21) spoke about being embedded in informal

Navigating stroke care

DOI: 10.3109/09638288.2014.882416

support networks which afforded them emotional and practical support. Family carers were identified as providing both physical support with activities of daily living as a result of stroke-related physical impairments, and support to meet the psychological and emotional impact of stroke. They also acted as conduits of communication with health care professionals when individuals were coming to terms with having had a stroke. As one man described: During my process of hospital stay she [partner] was there all through the time with me, so the doctor speak with her and she knows all the changes of what I’m going through and what I’m being there coping for, so she understands everything from the beginning. (Mr Russell) However, for five women the stroke significantly reduced their ability to mobilise such social capital from informal networks. Two women of Black ethnic origin reported that their partner had left them following their stroke, whereas three other women spoke about receiving mainly practical support from family or spouses, with the provision of emotional support limited by other life events, such as previous divorce or current illness among family members. All of the women in this subgroup reported pre-existing health problems, including diabetes, depression and anxiety, which further compounded their ability to cope with the longer term emotional impact of the stroke. They voiced difficulties adjusting to the emotional impact of the stroke, continuing to experience emotional problems, such as excessive bouts of crying, mood swings and depression. As a result, they felt socially isolated, ‘‘cut off’’ or ‘‘abandoned by services’’ after being discharged from rehabilitation. For most of these women, the combination of limited social and physical capital shaped higher expectations that stroke services would provide the necessary emotional support to help them to cope. Only one of these women, Mrs Ling, spoke about seeking out for herself emotional support to cope with the isolation after her stroke by getting in touch with a voluntary telephone support line: I rang myself because I don’t know what to do, I don’t know where to go, I don’t know what sort of service [there is] for people that had strokes. (Mrs Ling) Variations in economic capital The impact of the stroke on the financial circumstances of younger stroke survivors varied. Bourdieu describes economic capital as income, assets and services available to individuals or social groups within a particular field [22,23]. After discharge from hospital, adjusting to life after stroke among participants was also contingent on ability to access economic capital. Two men and one woman reported that the stroke had made little impact on their finances, as they were able to take early retirement and had good pension arrangements. A significant minority (N ¼ 9) who reported major health problems had not been in work prior to the stroke. They had experienced no changes in economic status, with most continuing to receive income and/or disability support, and thus had lower expectations of health care providing support to return to work. However, over half of participants reported that the stroke had a significant negative impact on their finances and were unable to return to work due to ongoing stroke-related impairments. Most of these reported that they were only just ‘‘making ends meet’’ and found it difficult to live on state benefits, or were having to use up their personal savings to survive. For example, Ms Cox, spoke of the financial hardship she was experiencing after her stroke.

1915

Recently migrated to the UK from Africa, she was unable to return to work as a registered nurse as the stroke had left her with significant weakness in the left arm. It was evident that it was the financial difficulties she was experiencing, rather than the stroke itself, that had become the pressing priority in her life: I don’t have money now. It has affected me badly because now I don’t have money. Just to keep me going, just to buy my needs, like washing things and all. I can’t do any other things anymore. It’s just that. That is even worse, it’s even troubling me, not the stroke anymore. (Ms Cox) In this part of the field of stroke such participants spoke about the lack of vocational support to return to work, thus limiting their ability to accumulate economic capital in the future. They had high expectations that community stroke rehabilitation would meet their need to support them to return to work. Only one participant reported that she had managed to refer herself to a vocational rehabilitation programme run by a local charity organisation, which she had found out about serendipitously through a local peer support group for younger stroke survivors. Most, however, articulated an immense sense of disappointment that community rehabilitation had not gone far enough to address their social participation goals directed to returning to work, as one woman said: They don’t really help you get back into life, do they? They just sort of, you have a stroke, you have physio and that’s it. They don’t really realise that at the end of the day the person who had a stroke while they were at work, and obviously, to find out what they were doing, it affected my hand so obviously that was my job, so in effect: How will she move on from there? What can we do to help her get back into work? (Ms Watson) In summary, younger stroke survivors’ experiences of care in the field of stroke varied. Variations in experiences of care were informed by differences in expectations of support at different time points after stroke and the changing structures surrounding the field of stroke. Stroke care appeared to largely meet the biomedical needs of individuals in the acute hospital phase, but variations in experiences of care were more contingent on access to different forms of capital when adjusting to life after stroke in the longer term.

Discussion We investigated younger stroke survivors’ experiences of navigating the field of stroke care. While previous studies have reported that stroke services are not tailored to the needs of younger stroke survivors [5,13,16–21], we found a more nuanced picture. Our study contributes to the existing literature by highlighting how variations in experiences of care among younger stroke survivors are socially embedded. Drawing on Bourdieu [22], we argue that stroke care can be characterised as a temporal field of social activity and relationships with its own boundaries and power structures which change over time. Variations in experiences of care were influenced by the interaction between the structures of the field of stroke and the agency of individuals (informed by their habitus) within this field, which in turn shaped expectations for professional support and access to different forms of capital at different time points. At an early stage in the field of stroke, participants’ accounts suggested that the structures shaping the field of stroke were well organised and perceived as a disease specific specialist service, which reflects the development and implementation of the stroke

1916

E. Sadler et al.

unit model of care [28,29]. On entering the unfamiliar or ‘‘nondoxic’’ field [22] of stroke, individuals were looking for professional guidance and expertise to manage the acute event and the care they received largely appeared to meet that expectation. However, variations in experiences of care at this stage were influenced by pre-existing levels of cultural capital among individuals, which shaped expectations that specific needs for information at this early stage would be met. As Scambler and Newton [27] report in a study of parents of children with Battens Disease, mobilising this form of capital proved difficult when health care professionals held the socially legitimated cultural and symbolic capital within the biomedical field of stroke. It is well documented that long-term care is more fragmented than acute stroke care [7,8,30]. After discharge from hospital, it was here that variations in experiences of care among participants were more evident. At this stage in the field of stroke care, a number of participants expected that rehabilitation would continue to address physical impairments, psychosocial and social participation needs, but services were largely perceived as only able to address biomedical needs, and for a limited period of time. Similar differences in lay and professional priorities (among younger and older age groups) in stroke have also been found in the literature [21,33–35]. Navigating the field of stroke at this point in the context of limited service provision, was thus largely contingent on individuals’ ability to draw on different forms of capital. To this end, the ability to mobilise social capital through emotional and practical support provided by existing informal networks was particularly important for most participants to support their adjustment after stroke. However, for some individuals a number of factors significantly reduced their capacity to mobilise this form of capital, including the breakdown of relationships, and reduced physical capital [25,26] in terms of physical disability and coping with other co-morbid conditions following their stroke. This shaped perceptions of being abandoned by services. An ethnographic study of how health care professionals accommodate the needs of stroke patients suggests that an individual’s level of knowledge about how health and social care systems work (said to be a form of social capital) influences the quality of care they received [36]. Our study of younger stroke survivors found that for a minority cultural capital in the form of tacit knowledge of skills and knowledge shaped reported experiences of care and unmet need. For the majority, however, once discharged from hospital, the ability to mobilise and accumulate cultural and economic forms of capital as resources to adjust to life after stroke was limited. At this point in the field of stroke, the lack of services to meet individuals’ needs for further information about long-term recovery and vocational support had a negative effect on long-term adjustment. The lack of available vocational support for younger stroke survivors is well documented in the literature [13,14,37–39]. In our study, a significant proportion reported the need for vocational support, but found there was little professional guidance available. This lack of guidance not only had a detrimental effect on opportunities for social participation, but also in terms of accumulating economic capital in the future. Implications for policy and service development Our study raises a number of implications for policy and service development in stroke care. First, variations in experiences of care among younger stroke survivors are embedded in a social context. Looking at stroke as a temporal biomedical field highlights how the changing structures of the field of stroke interact with the agency of individuals in that field. On entering the new and unfamiliar field of stroke care, participants sought professional guidance and expertise to manage the acute event. In acute stroke care it was implicit for participants that expertise and guidance was to be

Disabil Rehabil, 2014; 36(22): 1911–1917

prioritised and largely this was reported as what was received, arguably reflecting two decades of international efforts to improve the quality of acute stroke care, with evidence of the benefits of the stroke unit model [28,29]. However, despite National Stroke Guidelines [7] that recommend information provision as a core aspect of stroke service provision [40], difficulties accessing information in hospital limited the agency of some individuals wanting to take more of an active role in their recovery. This was related to their level of cultural capital and prior expectations of being a patient. Health care professionals working in stroke care need to be aware of the importance of providing timely and tailored information and the implications this has for promoting agency among individuals recovering from stroke. Second, we found that variations in experiences of care were more evident after discharge from hospital, with professional guidance still sought, but many felt services were time limited or unavailable. It was here that participants’ required the capital and agency to navigate the field of stroke. Understanding younger stroke survivors’ experiences of care and how individuals report satisfaction with stroke care is related to individual expectations of what services should provide. Given the nature of health policy drives around person centred medicine [41] and self-management of long-term conditions such as stroke [42], there is a need to better understand and foster how individuals may draw on different forms of capital as resources and how longer term services can support this. Despite international efforts to improve the quality of acute care, effective models of community stroke care still need to be developed [43]. Third, emotional and practical support from family and friends as a form of social capital was an important resource for the majority of participants in terms of coping with the impact of the stroke. However, stroke significantly reduced the ability to draw on social capital for some, which shaped poor long-term adjustment. Better coordination between stroke services and other social care services providing longer term emotional support programmes for younger stroke survivors is warranted. Finally, we found that the lack of vocational support available for younger stroke survivors had a significant negative impact on their ability to mobilise and accumulate economic capital, and thus longer term adjustment after stroke. In the context of limited stroke service provision to address vocational needs among individuals of working age, better coordinated links between stroke services and other voluntary service providers offering vocational support need to be established.

Acknowledgements We would like to thank all the participants who took part in the interviews. We are grateful to anonymous reviewers and Sasha Scambler for their insightful comments on earlier drafts of this paper.

Declaration of interest The authors report no conflicts in interest. The study was funded by a Stroke Association research grant (TSA 2006/06). The research was supported by the National Institute for Health Research (NIHR) Biomedical Research Centre based at Guy’s and St Thomas’ NHS Foundation Trust and King’s College London. The views expressed are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health.

References 1. World Health Organisation (WHO). Stroke, cerebrovascular accident. Geneva: WHO; 2009. Available from: http://www.who.int/ topics/cerebrovascularaccident/en [last accessed 6 Nov 2011].

DOI: 10.3109/09638288.2014.882416

2. McKevitt C, Coshall C, Tilling K, Wolfe CDA. Are there inequalities in the provision of stroke care? Analysis of an innercity stroke register. Stroke 2005;36:315–20. 3. Rothwell PM, Coull AJ, Giles MF, et al. Change in stroke incidence, mortality, case-fatality, severity, and risk factors in Oxfordshire, UK from 1981 to 2004 (Oxford Vascular Study). Lancet 2004;363: 1925–33. 4. Kaufman S, Becker G. Stroke: health care on the periphery. Soc Sci Med 1986;22:983–9. 5. Mold F, Wolfe CDA, McKevitt C. Falling through the net of stroke care. Health Soc Care Comm 2006;14:349–56. 6. Department of Health. National service framework for older people. London: Department of Health; 2001. 7. Intercollegiate Stroke Working Party. National Clinical Guideline for Stroke. 4th ed. London: Royal College of Physicians; 2012. 8. Department of Health. The National Stroke Strategy. London: Department of Health; 2007. 9. Intercollegiate Stroke Working Party. National Sentinel Stroke Audit 2010 Round 7. London: Royal College of Physicians; 2011. 10. Stone SD. Reactions to invisible disability: the experiences of young women survivors of posthaemorrhagic stroke. Disabil Rehabil 2005; 27:293–304. 11. Ro¨ding J, Glader E-L, Malm J, Lindstrom B. Life satisfaction in younger individuals after stroke: different predisposing factors among men and women. J Rehabil Med 2010;42:155–61. 12. Banks P, Pearson C. Parallel lives: younger stroke survivors and their partners coping with crisis. Sexual Relations Therap 2004;19: 413–29. 13. Medin J, Barajas J, Ekberg K. Stroke patients’ experiences of return to work. Disabil Rehabil 2006;28:1051–60. 14. Alaszewski A, Alaszewski H, Potter J, Penhale B. Working after a stroke: survivors’ experiences and perceptions of barriers to and facilitators of the return to paid employment. Disabil Rehabil 2007; 29:1858–69. 15. Lawrence M. Young adults’ experience of stroke: a qualitative review of the literature. Br J Nurs 2010;19:241–8. 16. Kersten P, Low JTS, Ashburn A, et al. The unmet needs of young people who have had a stroke: results of a national UK survey. Disabil Rehabil 2002;24:860–6. 17. Low JTS, Kersten P, Ashburn A, et al. A study to evaluate the met and unmet needs of members belonging to young stroke groups affiliated with the stroke association. Disabil Rehabil 2003;25: 1052–6. 18. Stone SD. Patient concerns posthaemorrhagic stroke: a study of the Internet narratives of patients with ruptured arteriovenous malformation. J Clin Nurs 2007;16:289–97. 19. Ro¨ding J. Stroke in the younger: self-reported impact on work situation, cognitive function, physical function and life satisfactionA national survey [Ph.D thesis]. Umea˚ University; 2009. 20. Daniel K, Wolfe CDA, Busch MA, McKevitt C. What are the social consequences of stroke for working-aged adults? A systematic review. Stroke 2009;40:e431–40. 21. Bendz M. The first year of rehabilitation after a stroke – from two perspectives. Scand J Car Sci 2003;17:215–22. 22. Bourdieu P. The logic of practice. Stanford (CA): Stanford University Press;1990.

Navigating stroke care

1917

23. Bourdieu P. The forms of capital. In: Richardson J, ed. Handbook of theory and research for the sociology of education. New York (NY): Greenwood; 1968:241–58. 24. Bourdieu P, Waquant L. An invitation to reflexive sociology. Cambridge: Policy Press; 1992. 25. Bourdieu P. Sport and social class. Soc Sci Info 1978;17:819–40. 26. Williams SJ. Theorising class, health and lifestyles: can Bourdieu help us? Soc Health Ill 1995;17:577–604. 27. Scambler S, Newton P. Capital transactions, disruptions and the emergence of personal capital in a lifeworld under attack. Soc Theory Health 2011;9:130–46. 28. Stroke Trialists’ Collaboration. Collaborative systematic review of the randomised trials of organised inpatient (stroke unit) care after stroke. Br Med J 1997;314:1151–9. 29. Langhorne P, Pollock A. What are the components of effective stroke unit care? Age Ageing 2002;31:365–71. 30. Young J, Murray J, Forster A. Review of longer-term problems after disabling stroke. Rev Clin Geront 2003;13:55–65. 31. Heuschmann PU, Grieve AP, Toschke AM, et al. Ethnic group disparities in 10-year trends in stroke incidence and vascular risk factors The South London Stroke Register (SLSR). Stroke 2008;39: 2204–10. 32. Strauss AL, Corbin J. Basics of qualitative research. Techniques and procedures for developing grounded theory. 2nd ed. Newbury Park (CA): Sage; 1990. 33. Hafsteinsdo´ttir TB, Grypdonck M. Being a stroke patient: a review of the literature. J Adv Nurs 1997;26:580–8. 34. Morris R, Payne O, Lambert A. Patient, carer and staff experience of a hospital-based stroke service. Int J Qual Health Care 2007;19: 105–12. 35. Becker G, Kaufman SR. Managing an uncertain illness trajectory in old age: patients’ and physicians’ views of stroke. Med Anthrop Quart 1995;9:165–87. 36. Allen D, Griffiths L, Lyne P. Accommodating health and social care needs: routine resource allocation in stroke rehabilitation. Soc Health Ill 2004;26:411–32. 37. Corr S, Wilmer S. Returning to work after a stroke: an important but neglected area. Br J Occup Ther 2003;66:186–92. 38. Koch L, Egbert N, Coeling H, Ayers D. Returning to work after the onset of illness experiences of right hemisphere stroke survivors. Rehabil Counsel Bull 2005;48:209–18. 39. Lock S, Jordan L, Bryan K, Maxim J. Work after stroke: focusing on barriers and enablers. Disabil Soc 2005;20:33–47. 40. Smith J, Forster A, House A, et al. Information provision for stroke patients and their caregivers. Cochrane Database Sys Rev 2008;(2):CD001919. doi: 10.1002/14651858.CD001919.pub2. 41. Institute of Medicine (US) Committee on Quality of Health Care in America. Crossing the quality chasm: a new health system for the 21st century. Washington (DC): National Academies Press; 2001. 42. Department of Health. The expert patient: a new approach to chronic disease management in the 21st century. London: Department of Health; 2001. 43. National Audit Office. Progress in improving stroke care. Department of Health; 2010. Available from: http://www.nao. org.uk/report/department-of-health-progress-in-improving-strokecare/ [last accessed 15 Aug 2013].

Copyright of Disability & Rehabilitation is the property of Taylor & Francis Ltd and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use.