research on users’ views about stroke services: towards an empowerment research paradigm or more...

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SCHOLARLY PAPER

Research Services: Research

on Users’ Views about Stroke Towards an Empowerment Paradigm or More of the Same?

Carol Thomas Anne Parry

Key Words User view research, empowerment, stroke services, health needs assessment, disability research.

Summary The findings of two small-scale qualitative research projects about the health needs of people with stroke are used to introduce and discuss key concepts which frame current debates about the health care professional’s role and relationship to consumers of health care, the place of ‘user view’ research and the ‘consumer voice’ in health needs assessment, and the political nature of research on chronic illness and disability.

Introduction The commitment of the NHS research and development programme to reflecting the concerns of consumers (Peckham, 1991) can be seen as a response t o central government initiatives to introduce market values into the health care system. During the last three decades the emphasis of service delivery has been moving from ‘product’ to ‘customer’ orientation (Kotler, 1990). A similar shift is occurring in research activity too. However, despite increasing provision of client-centred services and research-based practice, many disabled people are dissatisfied with the prevailing system of service delivery and the process of research that provides the knowledge base for professional practice (Johnson, 1993; Oliver, 1993).

Swift complained that: ‘The process has been to seek “expert” opinions about the needs of target populations, to back this expert opinion with an infusion of funds administered by a bureaucracy of experts, and to wonder at the resistance of indigenous populations to our efforts to improve their lives.’ (Swift, 1984, pp xi-xv)

Substituting ‘disabled people’ for ‘indigenous populations’ illustrates why Zarb (1992) claims that disabled people and other minority groups have been systematically excluded from the process of research production. Although the

medical profession has recently become concerned about how ‘patients and the public can be involved in research by helping to set the research agenda’ (Goodacre and Smith, 1995>, the terminology suggests that old perspectives will die hard and that the ‘medical model’ will not easily adapt to the new political agenda. The ‘medical model of disability’, with its individualist focus on the problems of disabled people and problem-solving by practitioners, is vehemently rejected by many people with disabilities (Scullion, 1995) but it is so dominant in health care and directs so much research that other practitioners may not have questioned their own perspectives or considered if there is a n alternative model to guide their research and practice.

This paper presents the findings of two small- scale research projects on the views of users about the services they experienced as the result of stroke. The purpose of the paper goes beyond this, however. We want to locate these findings in a broader discussion about key concepts in current debates centering on the relationship between ‘users’ and health professionals, the place of the consumer voice in health needs assessment, and the nature of research on chronic illness and disability.

Some in the purchasing authorities, provider organisations and professional groups in health care are beginning to recognise that the voice of the service user must be carefully listened to and taken account of in service planning, commis- sioning, contracting and delivery. For example, in ‘health needs assessments’ of groups in the popu- lation, a place is now frequently found for the ‘subjective’ accounts of lay people alongside the ‘objective’ accounts of clinicians and other ‘experts’. There is further recognition that one of the ways in which to elicit the ‘user view’ is through research. Thus it becomes legitimate for researchers to seek out users and t o entice them into participation in research projects with the promise that ‘your voice counts’.

Therefore, many have welcomed this shift, not least those in the research community who hold the view that for too long patients’/users’ own experiences, assessments and views about the

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health services they encounter are seen at best as of no significance, and at worst as a n irritating diversion. To a certain extent, the shift acknowledges that users’ perceptions may well differ from those of practitioners, and even conflict with them, and some see it as potentially or actually empowering of patients. But t o what extent is research on ‘users’ views’ really empowering of people who use health services? This question will be discussed following a presentation of our own research on users’ views.

The Research Projects The authors were commissioned by two health authorities (acting independently) to undertake research on ‘users’ views’ of stroke services in the autumns of 1993 (referred to as project A: Parry, Thomas and Clark, 1993)* and 1994 (referred to as project B: Thomas and Parry, 1995). The users in these studies were all living at home and had variable experiences of stroke with differing clin- ical outcomes and residual levels of disability. They had experienced stroke (sometimes repeat- edly) between nine years and four months before the interview, although most respondents had had a stroke within 12 months of interview. The authors conducted eight in-depth interviews in project A, and seven in-depth interviews in project B (two of the respondents were interviewed together, being spouses). Respondents were selected on a non-random basis with names being passed to us after initial contact had been made, and agreement for interview secured, by health service staff. Based on small and non-random samples, our results have no claim to formal statistical representativeness, but we believe that most of the issues raised by our respondents are typical of those that would be found in similarly conducted interviews with a large and represen- tative sample of people with stroke. Respondents’ ages ranged from 45 t o 77 years. In some interviews, a spouse or other relative was present. In most cases spouses were the main informal carers and, although we were not conducting a study of carers, we were happy to report on their experiences in our findings. In addition to the effects of stroke, a number of the respondents had other chronic health problems, most commonly cardiovascular conditions.

Our research methodology was qualitative, using the same very loosely structured interview schedule in both sets of interviews. This schedule amounted t o no more than an aide-memoire. Respondents were given assurances that the

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*While director of the Health Research Institute, Sheffield Hallam University, Professor David Clark played a significant role in research project A.

study was being conducted by independent researchers, not representatives of the health services involved, and that individuals would not be identifiable in the feedback of findings to the purchasing authorities. Our approach in the interviews was to encourage respondents to feel free to express their thoughts and feelings about their experiences of services, and to be able to talk about these in the context of their broader life experiences, both past and present. This necessi- tated a conversational and flexible style of interviewing, with minimal interviewer direct- iveness. The task was to facilitate the true expression and articulation of the ‘user view’, rather than the forcing of user experience and opinion into pre-conceived categories and typolo- gies drawn up by so-called ‘expert’ researchers - an all too common practice in chronic illness and disability research (Barnes, 1992; Oliver, 1992; Zarb, 1992; Swain et a1 1993).

Interviews, which were tape-recorded, covered the following core areas:

The stroke event(s) (when, what happened, contact with health professionals, current health status).

Hospital admission (process of admission and care in hospital).

Hospital discharge (timing, preparation for, process).

Life at home (difficulties, needs, services, social support, changes in life).

Interviews lasted between 45 minutes and two hours. The analysis of the interview transcripts yielded both common and individual themes and issues which were reported on in separate research reports to the purchasing authorities.

The Interviews: Themes and Issues Arising Packages of Care Since their stroke, all the respondents had been involved in quite complex and changing patterns of care. There are three key elements of this care: formal care (primary and secondary health care and social service care); informal care (family, friends, voluntary groups); and self-care. The ‘package’ of care experienced is therefore a combi- nation of care-inputs from a range of individuals and agencies, and includes the care work of the patients themselves. Our research raised two important questions about this: to what degree do patients experience the package of care as inte- grated, co-ordinated or disjointed? And, what might improve co-ordination across the primary/ secondary/informal care interfaces?

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Self-care and Motivation The importance of self-care was demonstrated in respondents’ accounts of attempts to maximise their independence, in their desire to do as much as they could for themselves as quickly as possible. Motivation to maximise independence appeared to be a very significant factor in the rehabilitation process. As one man expressed it:

‘Because you can’t believe it, you know, I couldn’t stand .... I couldn’t do anything ... and eventually at the hospital I got hold of a wheelchair which I more or less made my own .... I know they m u s t have been absolutely fed up with me because I wouldn’t let go of the damned thing .... But you see, it gave me a great deal of independence that I hadn’t had, and I got to the point when, with the wheelchair, I could get to the toilet on my own and I could deal with myself in the toilet, that sort of thing.’

‘Independence’ is a very complex issue and does not necessarily mean the same for practitioners and people with disabilities. Although physiotherapists emerged from this study in a much more positive light than from Johnson’s (1993) study, this respondent was describing the same sharp experience of independence as that author noted, thwarted to a certain extent by the attitudes of non-disabled people and needing to beg or borrow an essential aid.

Some formal carers, notably physiotherapists and occupational therapists, as well as family carers, appeared to play a crucial role in encouraging patients to engage in the physical and emotional labour necessary to maximise the opportunities for ‘successful rehabilitation’. However, some questions were raised: Could other health professionals play more of a part in this? Should the efforts of formal and informal carers be more co- ordinated in this? What are the effects of the late start of rehabilitation on patient motivation? Do disabled people find health professionals’ insistence on independence motivating or oppressiveY

Overall Levels of Satisfaction with Services Most respondents were generally satisfied or very satisfied with both the health and social service care they had received; they felt that their care needs had been met and some enthusiastically praised health care professionals and social service workers. Therapists were held in particularly high regard. Nurses and doctors were less frequently commented on or referred to. Doctors appeared t o be somewhat ephemeral figures in respondents’ care experiences. However, with one exception, all respondents reported displeasure with specific aspects of their care, or particular care episodes. Two respondents were very critical of aspects or episodes of care in hospital but

were satisfied or very satisfied with out-patient rehabilitation services. Areas of dissatisfaction in relation to health service care are reported on below and suggest that there is certainly room for improvement in aspects of care of people with stroke.

Hospital Admission All respondents had been admitted to hospital as a result of stroke, or as a consequence of some other health event which was followed shortly after by a stroke. Respondents and their families appear not to have been offered, or to have considered, any alternative to hospital admission, and both respondents and informal carers expressed the view that hospital was ‘the right place to be’ because the family carer(s) could not have coped with the situation.

‘ I tried to, I tried to dress him in the morning. I’d managed to get him washed and dressed on the settee here, like, but, er, you know, there were no way I could cope.’ (wife)

This carer, like some other spouses in the two studies, had chronic ill-health herself. The poor health and advanced years of carers, and other features of domestic circumstances, are clearly relevant to decisions about hospital admission. This relationship between ‘social factors’ and hospital admission is an interesting one in the light of debate during the last ten years about the organisation of stroke care and rehabilitation (see, for example, Wade and Langton Hewer, 1985; Bamford et al, 1986; Anderson, 1988; Wade, 1992; Forster and Young, 1992; Young and Forster, 1993). Dennis (1987) reports that between 38% and 60% of stroke patients nationally are never referred to hospital, and the comparative efficacy and cost effectiveness of different types of hospital care and community-based care is in question.

Quality of Care: Interactions with Staff Several respondents commented on the lack of attention paid by hospital staff, particularly nurses, to the needs of the patient ‘as a person’. One of these was generally very satisfied with his health care but as a frequent hospital in-patient over a number of years had noticed a recent decline in the amount of time nurses spent in conversation with, or attending to the needs of patients: ‘I’ve noticed that one or two patients have been neglected.’ He characterised hospital care today as ‘fast and furious’. He explained the ‘neglect’ of individuals in terms of staff shortage: ‘Some people want to go to the toilet - they say hang on but they don’t come back.’ Another respondent developed a considerable dislike of one of the hospitals she was moved to:

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‘Same as one night, well she was a sister, er, I had the, you know, had to get out to the commode and she came and told me, she said: “Now you can’t have the commode or go to the toilet for four and a half hours, you’ve got to hold your water now.” You know, it just upsets you and I th ink it makes you want to go .... It was very distressing.’

One respondent’s wife was extremely critical of hospital care, particularly the nursing care that her husband had received (she was herself a health care professional). Both she and the respondent reported in much detail on what they saw as the shortcomings in hospital care, which included a failure of staff to take account of a pre- existing neck problem causing the respondent unnecessary pain; a series of sudden moves t o other wards; the unsuitability of the ward and cubicle environments (cramped space, lack of privacy for seriously ill and dying patients, noise); contradictory instructions from nursing staff. I t was clear from both respondents’ and carers’ accounts that a number of informal carers spent long hours beside patients’ hospital beds to provide basic nursing care and support.

Several respondents gave accounts of trying to ‘make sense ofwhat had happened to them: what stroke meant and what had caused it. Not everyone had been told the diagnosis:

‘I mean, nobody ever told me what was wrong with me except my niece who’d been up and had a look at the notes and let the cat out of the bag.’

Some expressed, or implied, the need to talk through their experience with health professionals and others, or otherwise communicate:

‘Now the f u n n y part begins - I couldn’t speak so nobody spoke to me, and that is the most heart- rending part about having a stroke.’

For most respondents, this was a need for factual information but also for the opportunity to talk about what stroke meant for them then and in the future. One respondent’s wife said that she did not feel well supported in terms of her own needs in coping with the trauma of her husband’s stroke. Her needs were particularly for more information about the medical aspects of her husband‘s condition and for the opportunity ‘just to talk’ about what each of them was going through:

‘Nobody talked to me, nobody told me what was going to happen, nobody said, you know, “J’s going to get better, J’s not going to get better.” I mean, I know they can’t say those sorts of things, but nobody gave me ... and it wasn’t just me, I noticed other people, if you wanted to know anything you had to go to the nurses’ station, and it depends on what sort of person you are to go there and I found ... l didn’t like it, it made me feel vulnerable to do that.’

In this woman’s view, po,or staff communication was not the result of staff shortage but of the tech- nical and task orientation.ef nursing.

Therapy Services One respondent and his wife expressed the view that physiotherapy might have beneficially begun earlier during the hospital stay:

‘There were one or two hiccups with physio .... She walked past in the morning saying: “1’11 see you in the morning M r A.” ... But tomorrow never comes does it? She only saw me once and that was for a little bit of physio while I was in bed -and that was all.’ ( M r A) ‘ I wondered if his movements would have been better if we had started physio earlier.’ ( M r s A)

Some respondents and carers raised issues to do with the quality and time-scale of follow-up rehabilitation services. Some carers felt that respondents and they themselves might have benefited from more intensive therapy, particularly physiotherapy but also occupational therapy, and for a longer period.

‘It would have helped if somebody, like if you’d have sat there and said: “I’m going to see you for an hour”, and “I want you to do that”, and “Don’t do that”, and, you know, more of it. There were only some vague instructions about how to, to get [her] up, you know, like this. But ...y ou see you can’t learn these things in one minute, can you?’ (carer)

All respondents continued to receive therapy support for a period of time following their return home. In most cases this involved out-patient visits of decreasing frequency. For one respondent, there was a gap of two months in physiotherapy treatment after hospital discharge for reasons which were not entirely clear but appeared to be associated with poor inter-hospital and hospital-GP communication:

‘The physiotherapist didn’t come and I felt bereft of any services. I hadn’t seen anyone else but the speech therapist, so she said: “Well you ought to see the doctor. I can’t believe he hasn’t been to see you.” So I said: “Well he only lives at the end of the road, 1 ’ 1 1 go and see him, I can walk.” So I made an appointment to see him. And I said: “ I don’t know why I’ve come really, I’ve come to see if I’m all right.’”

Eventually, domiciliary physiotherapy was arrang- ed for this respondent. Other respondents were asked if they would have preferred domiciliary treatment to out-patient rehabilitation. Most said they preferred, or did not mind, making out-patient visits even though this was often a time-consuming exercise. It became clear that this was associated with respondents’ need t o ‘get out of the house’ and to meet people socially. Such visits were an obvious source of social support, and a number of respondents and carers


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continued this contact through joining stroke clubs.

‘Well I missed the company, because there was so much company. That’s what I miss. Its the loneli- ness ... because you made friends .... I still go there for therapy, I still feel as though I’m going back home.’

These out-patient visits also gave some informal carers a much-needed break; others went along for the social contact.

Two informal carers gave accounts of how they felt compelled to seek out private therapy services. One of these was told that there was an 11-week waiting list for physiotherapy at the rehabilitation centre and so began to make arrangements for private physiotherapy at home. In fact, further developments in her husband’s condition altered the situation and he was eventually seen at the rehabilitation centre. The other carer employed ‘a trained nurse’ to give personal care at weekends. The nurse also engaged in ‘physiotherapy’:

‘She’s made him walk and she’s got him going, she’s persevered.’

Stress on Informal Carers Informal carers made very significant contribu- tions to the care of respondents. Informal carers not living with respondents were involved in complex visiting and support arrangements, fitting care in around working hours, other family commitments and so on. Reference has already been made t o the health problems that some carer-spouses had, and this clearly does play a role in decisions about hospital admission and follow-up services. However, one question for further research is whether the health and social needs of the informal carers are sufficiently taken into account by service providers (see also research by Anderson, 1988,1992). A related question is whether there are ways of making the three-way relationship between formal and informal carers and patients one of ‘a partnership in care’. There were several examples of conflicting perceptions between informal carers and health professionals about what was in the best interests of the person with stroke.

Respite care appears to be an important option available t o couples and families living with stroke. An informal carer with health problems commented that she could not cope without respite care:

‘I mean, this six weeks at home, two weeks in, I couldn’t do without that. Because we, I mean it isn’t, it isn’t the amount of work to do it’s the fact that you’re on call all the time. I mean he’s not difficult, he needs a lot of attention, but you’re kind of tied to it, and I suppose it’s the trauma of it as well, you know. Your whole life changes.’

Research on User Views: Towards User Empowerment? The research we conducted acted as a channel of communication between service users and services purchasers and providers. From these small studies, very valuable information was generated about health needs and the quality and organisation of stroke care. As researchers, we facilitated the expression of user experiences and perceptions, and were able to organise and present users’ views to decision makers within health authorities. An important finding of study A was that a mixture of in-patient care, domiciliary services and day care is needed to meet the needs of patients and carers at different times and that therapists and other health care practitioners need to be flexible so that specialist assessment and treatment are available where and when a patient needs them. Partly as the result of this finding, the health authority drew up plans to pilot a community- based therapy-led stroke service which offers patients a choice of treatment settings. But can our research be seen as contributing to the shifting of power in favour of service users, t o the process of patient empowerment? We shall argue that this is very doubtful.

Empowerment The idea that professionals can play a role in empowering individuals, groups or communities who have traditionally been relatively powerless in the face of professional groups, institutions and bureaucracies has become increasingly acknow- ledged and accepted in recent years. For example, the principles of empowerment and participation are seen as central in health promotion and new public health approaches which draw inspiration from the WHO Ottawa Charter, Health For All and Health Cities initiatives. In the Ottawa Charter, the empowering role of health promotion was underlined in the statement that health promotion is ‘the process of enabling people to increase control over, and to improve their health’ (WHO, 1986).

In the UK, three recent government initiatives can be seen as promoting a philosophy of care which emphasises autonomy, focuses on the needs of patients, and, where appropriate, their informal carers in the community setting, and seeks to empower the individual in self care and the ability to make choices (DOH l990,1991a, b).

Empowerment is an emerging concept with intu- itive appeal to health care practitioners. Patients are no longer viewed as recipients of care selected and delivered by practitioners and more attention is being paid to their rights and expectations as


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consumers of health care and partners in their own treatment.

However, as Rissel (1994) argues, the term ‘empowerment’ has been greatly abused -, for example, by those who use it to describe health initiatives and interventions without appearing to consider what empowerment actually means or entails. At root, the problem is that ‘empowerment still lacks a clear theoretical underpinning with key elements articulated and supported by research findings’ (pp 39-40). Rissel makes a useful distinction between psychological empowerment and community empowerment. Psychol- ogical empowerment operates at the level of the individual and involves people having ‘a feeling of greater control over their own lives’ ( ~ 4 5 ) . One could argue that having one’s voice listened to by purchasers, providers and health professionals through the mechanism of ‘user view research’ is an important step in psychological empowerment in relation to health. However, the contribution that such user view research can make to empowerment is in fact severely constrained by the nature of the research paradigm in operation, and not least, by the ‘social relations of research production’.

The Role of Research in Empowerment A lively debate about the ‘social relations of research production’ is to be found in the pages of some journals and recent books about disability (see, for example, Morris, 1992; Oliver, 1992; Zarb, 1992; Barnes, 1992, Swain et al , 1993). Alongside a critique of the individualising ‘medical model’ approach to disability (which locates the ‘problems’ faced by disabled people at the level of the individual impairment rather than a t the level of discriminating social attitudes and structures), a related critique of traditional academic research on disability has emerged.

‘The history of research on disability is undoubtedly one that has been dominated by the positivistic research paradigm both in terms of the research undertaken ... and the assumptions underpinning it .... Disability research, therefore, has reinforced the individual model of disability ... seeing the problems that disabled people face as being caused by their individual impairments.’ (Oliver, 1992, pp 107-1 08)

Oliver argues that a new research paradigm is needed, ‘What has variously been called critical inquiry, praxis or emancipatory research’ (~107) . An emancipatory research paradigm requires a different set of relationships between researcher and researched. In contrast t o traditional research where ‘social relations are built upon a firm distinction between the researcher and the researched; upon the belief that it is the researchers who have specialist knowledge and

skills; and that it is they who should decide what topics should be researched and be in control of the whole process of research production’ ( ~ 1 0 2 ) ~ an emancipatory research paradigm rejects the notion of research ‘subjects’ as passive research material. Instead, ‘the researched’ set the research agenda, decide upon which methodolo- gies are acceptable to them, determine what happens to research findings, and use the research process t o empower themselves. In this perspective, the tasks of researchers are to offer their skills and resources to the researched, and to facilitate the production of knowledge in the interests and under the control of the researched. Here, the relationship between researcher and researched is one of partnership, or reciprocity (Oliver, 1992; Morris, 1992; Zarb, 1992). Researchers have to ‘take sides’ with the ‘powerless’ against the ‘powerful’ (the service users against the health bureaucracies/professions). The purpose of research becomes explicitly one of social change.

‘The issue then for the emancipatory research paradigm is not how to empower people but, once people have decided to empower themselves, precisely what research can then do to facilitate this process.’

(Oliver, 1992, p i l l )

This debate about research paradigms is an important one for health researchers, and health practitioners who use research, to engage with. Scullion (1995) has raised a number of controver- sial issues in disability research with the express purpose of enhancing political awareness of health care researchers and clinicians and giving disability research a higher profile for debate within the health care professions. We have only skated over the surface of this debate here, but reference to it is enough to warn us against making an automatic connection between ‘user view’ research and the process of empowerment. In order to claim that one’s research (or practice) is empowering, one has to be able to answer some fundamental questions about the relations of research production one is engaged in and the research paradigm in operation.

Conclusions The vast majority of research which ventures into the territory of users’ views, including our own research reported here, is conducted within ‘traditional’ research relations of production. Nevertheless, as the review of our findings showed, the qualitative research methodology we adopted did enable us to go some way towards enabling users’ views to be relatively freely articulated. Valuable insights were yielded and presented to ‘the powerful’ (purchasers, providers, practitioners) which could potentially make a


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difference in the interests of stroke patients. In this sense, our research could be said to have some.‘emancipatory potential’ (Zarb, 1992). But we have no illusions: overall, research like ours is fundamentally ‘more of the same’.

In order to give users more opportunity to direct knowledge that is generated, there should be more partnership at every stage: for example, consultation with local organisations and fora before the design is established; giving users a role in validating the findings; and identifying how the results can be disseminated to users as well as to purchasers and providers. Zarb (1992) acknowledges that the gold standard of disability research will remain futuristic, because research will continue to be led by professionals. French (1992) says that ‘ways must be found of encouraging and enabling disabled people to carry out research into their own situation, and for research practice to be adapted to ensure their full participation’. Incorporating collaborative partnerships into research designs can empower users by giving them the power and opportunity to influ- ence generation of research-based knowledge that has an impact on them.

Authors At the time of writing Carol Thomas PhD BA was senior lecturer in sociology and research co-ordinator for the health promotion and public health programme, and Anne Parry PhD MCSP DipTP is reader in physiotherapy and research co-ordinator for the health care practice and evaluation programme, both in the Health Research Institute, Sheffield Hallam University.

This article was received on August 2, 1995, and accepted on October 24, 1995.

Address for Correspondence Dr Carol Thomas BA PhD, Department of Applied Social Science, Lancaster University, Cartmel College, Lancaster LA1 4YL.

References Anderson, R (1988). ‘The contribution of informal care to the management of stroke’, International Disability Studies, 10,

Anderson, R (1 992). The Aftermath of Stroke: The experiences of patients and their families, Cambridge University Press. Bamford, J, Sandercock, P, Warlow, C and Gray, M (1986). ‘Why are patients with acute stroke admitted to hospital?’ British Medical Journal, 292, 1369-72.

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Barnes, C (1 992). ’Qualitative research: Valuable or irrelevant?’ Disability, Handicap and Society, 7 , 2, 11 5-124. Dennis, M (1987). ‘Incidence of risk factors and outcome’, British Journal of Hospital Medicine, March, 194-1 98. Department of Health (1990). The National Health Service and Community Care Act, HMSO Department of Health (1991a) . The Patients’ Charter, HMSO. Department of Health (1991 b). The Health of the Nation, HMSO. French, S (1992). ‘Researching disability: The way forward’, Disability and Rehabilitation, 14, 4, 183-1 86.

Forster, A and Young, J (1992). ‘Stroke rehabilitation: Can we do better?’ British Medical Journal, 305, 1446-47. Goodacre, H and Smith, R (1995). ‘The rights of patients in research’, British Medical Journal, 31 0, 1277-78. Johnson, R (1993). ‘Attitudes don’t just hang in the air’, Physio- therapy, 79,9,619-627. Kotler, P (1 990). Strategic Marketing for Non-profit Organisations, Prentice Hall, London, 4th edn. Morris, J (1 992). ’Personal and political: A feminist perspective on researching physical disability’, Disability, Handicap and Society,

Oliver, M (1992). ‘Changing the social relations of research production?’ Disability, Handicap and Society, 7, 2, 101 -1 14.

Oliver, M (1 993). ‘Redefining disability: A challenge to research’ in: Swain, J, Finkelstein, V, French, S and Oliver, M (eds) Disabling Barriers - Enabling environments, Sage, London, pages 61-68.

Parry, A , Thomas, C and Clark, D (1993). ‘The health needs of people with stroke: A preliminary study, Health Research Institute Research Report (4), Sheffield Hallam University. Peckham, M (1991). ‘Research and development for the National Health Service’, Lancet, 338, 367-371.

Rissel, C (1994). ‘Empowerment: The holy grail of health promotion?’ Health Promotion International, 9, 1, 39-47. Scullion, P (1995). ‘Disability research and health care professionals: Some issues for debate’, British Journal of Therapy and Rehabilitation, 2, 6, 31 8-322.

Swain, J, Finkelstein, V, French, S, and Oliver, M (eds) (1993). Disabling Barriers - Enabling environments, Sage, London.

Swift, C (1984). ‘Empowerment: An antidote to folly’, Prevention in Human Services, 3, 213, xi-xv.

Thomas, C and Parry, A (1995). ‘The health needs and experiences of stroke patients’, Health Research Institute Research Report (8), Sheffield Hallam University. Wade, D T and Langton Hewer, R (1 985). ‘Hospital admission for acute stroke: Who, for how long, and to what effect?’ Journal of Epidemiology and Community Health, 39, 347-352. Wade, D T (1992). ‘Stroke: Rehabilitation and long-term care’, Lancet, 339,791-793. World Health Organisation (1 986). Ottawa Charter for Health Promotion, First International Health Promotion Conference, Ottawa, Canada. Young, J B and Forster, A (1993). ‘Day hospital and home physiotherapy for stroke patients - A comparative cost effective study’, Journal of the Royal College of Physicians, 27, 252-257. Zarb, G (1992). ‘On the road to Damascus: First steps towards changing the relations of disability research production’, Disability, Handicap and Society, 7, 2,125-138.

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