Family Practice Advance Access originally published online on November 24, 2005
Family Practice 2006 23(1):131-136; doi:10.1093/fampra/cmi098
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What do stroke patients and their carers want from community services?
Department of Primary Care and General Practice, University of Birmingham, Primary Care, Clinical Sciences Building, Edgbaston, Birmingham, B15 2TT, UK.
Correspondence to Dr Jonathan Mant, Department of Primary Care and General Practice, University of Birmingham, Primary Care, Clinical Sciences Building, Edgbaston, Birmingham, B15 2TT, UK; Email: j.w.mant{at}bham.ac.uk
Received 20 April 2005; Accepted 26 October 2005.
Hare R, Rogers H, Lester H, McManus RJ and Mant J. What do stroke patients and their carers want from community services? Family Practice 2006; 23: 131–136.
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Abstract |
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Background. Previous research has focused on the longer term needs of ‘new’ stroke patients at fixed time intervals after the event, but neglected those of stroke patients who may have had the event many years earlier.
Objective. To identify the long-term support needs of patients with prevalent stroke, and their carers identified from practice stroke registers.
Design of study. Patients and their carers were invited to attend focus groups at the university, a nursing home or in the community.
Setting. Seven practices in South Birmingham. Adults (18+) with a validated record of stroke.
Methods. Focus groups were audio-taped and data analysed using a constant comparison method.
Results. Twenty-seven patients and six carers participated in the study. Three major themes emerged: emotional and psychological problems; lack of information available for patients and their families; the importance of Primary Care as the first point of contact for information or problems, even if these were non medical.
Conclusions. Better methods of providing information for long-term survivors of stroke, and for addressing their emotional and psychological needs are required. Primary care could be a key setting for helping to provide more inclusive services for both patient and carer.
Keywords. Carers, primary care, psychological needs, qualitative methods, stroke.
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Introduction |
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Two out of three patients survive their first stroke, but many are left with long-term disability and consequent needs for health care.1 The National Service Framework (NSF) for older people recommends that long-term support and care is given to stroke patients and their carers so that they can ‘participate in a multidisciplinary programme of secondary prevention and rehabilitation’. Also services should ‘provide social and emotional support to minimise the loss of independence following the stroke, and help manage the consequences of stroke’.2 In the UK, the new General Medical Services (GMS) 2 contract in primary care emphasises review of secondary prevention, but not other aspects of care.
In order to identify the longer-term issues that primary care based services for stroke will need to address, Murray et al.3,4 reviewed both the qualitative and the quantitative literature. The studies they found focussed on the longer-term problems of people followed up with a new stroke (‘incident’ cases). In Primary Care, it is the people who have had a stroke in the past (‘prevalent’ cases) that are of greater relevance, since these reflect the patients that will be on practice stroke registers.
Potentially, the problems faced by these two populations are quite different. For example, only one of the qualitative studies in Murray's (2003) review included patients who had had a stroke up to 5 years earlier, whereas many patients in primary care will have lived for considerably longer than this after their stroke. Furthermore, much of the qualitative literature focuses on patient experiences in hospital and of transferring into the community, with longer-term problems relatively neglected.3,5–9
The National Clinical Guideline for Stroke emphasises the importance of including the opinions of patients and carers in plans for service development.10 This focus group study aimed to explore needs of patients with stroke and their families, identified from primary care ‘prevalence’ registers.
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Methodology |
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Seven practices from South Birmingham Primary Care Trust were purposefully recruited to participate in the study. The practices were selected to represent both small and larger practices (range of list size from 2215 to 7572) and areas of low and high deprivation (index of multiple deprivation score from 18.97 to 46.31).11 The South Birmingham Local Research Ethics Committee approved the study.
The study population consisted of adults (18+) registered with the seven practices in January 2002 who had a relevant Read code (alphanumeric code for clinical term) for cerebrovascular disease.11 The presence of cerebrovascular disease was confirmed by a combination of patient survey, case note review and cross-checking with hospital information systems.11 A question on the patient survey asked if they would be willing to attend a focus group to discuss their experiences.
Two university-based focus groups were held. Focus groups were used since they provide an opportunity for discussion between participants with similar and diverging views, with the resulting supportive and argumentative dynamics adding to the richness of the dataset. Each group met on two occasions, at 2-week intervals. These groups were supplemented by home visits to two housebound patients, and two further discussion groups were held on single occasions in local nursing homes. These visits were carried out to enable severely disabled patients to participate in the research. Data collection took place between July and November 2002.
The topic guide was developed from a literature review, and included questions on current problems, types of support/services currently received, and aspirations/need for support.
The groups were moderated by a GP (HL) who is experienced in focus group methodology, and facilitated by a Research Fellow (HR) and a Research Associate (RH). The university groups lasted between 60 and 90 minutes, and were audio taped. HR took field notes at all groups and visits. The key issues discussed during the first group were fed back to participants at the beginning of the second group, enabling respondent validation of emerging themes.
HL and HR were responsible for analysis. A constant comparison method where ideas were continually checked against the original data was used. Themes were defined by the two researchers constantly reading and re-reading the transcripts and discussing emerging ideas and themes until agreement was reached. Searching for disconfirming evidence also increased reliability. Data collection and analysis were concurrent, and continued until data saturation was felt to be complete. Quotations from patients and carers have been chosen on grounds of representativeness.
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Results |
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Four hundred and twenty-one people with confirmed stroke were identified from the practice registers, of whom 82 (19.5%) indicated that they would be willing to attend a focus group. These 82 were all contacted by telephone and 27 patients and 6 carers subsequently participated in the focus groups/interviews. The commonest reasons for non-participation were change of mind and feeling unwell.
Demographics of all participants are shown in Table 1.
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Themes arising from the focus groups
Three main themes emerged from the focus groups and interviews; psychological and emotional problems, information needs, and contact with services.
Psychological and emotional problems
Recognising limitations and developing coping strategies.
Some participants had developed their own coping strategies that were primarily based on recognising their ‘limitations’ or finding ‘your own level’. In general terms most people felt they had slowed down. The majority expressed frustration at their inability to do certain things within the home, whilst others said they were more aware of potential risks outside:
"People look at me strange because sometimes I get a lack of feeling in my legs and I trip over... I say I'm fine but it does worry me. I don't feel that this is lack of confidence otherwise I wouldn't go out at all. I just accept that sometimes I lose my balance" (ptF3).Most reported practical steps they had taken to reduce these problems, such as removing loose mats from inside the house, and having paving slabs removed from their garden.
Fear of another stroke. Some of the group were concerned that they might have subsequent strokes:
"It is always in the back of your mind" (ptM2).
A minority felt that if it was going to happen, there was little that they could do about it. By developing their own coping strategies, they felt they were able to live a near-normal life, although the ‘threat’ of a further stroke was always in their subconsciousness:
"I'm frightened to go out in case it (the stroke) happens again" (ptF5).
Anxiety and emotional consequences. Most participants reported a feeling of generalised anxiety, although interestingly none had sought any support or treatment for it. Lack of confidence concerned many:
"The only thing that has affected me is that I've lost my nerve... I'm frightened of falling" (ptF7).
Some said that they felt safe in the house, but others felt that they wanted to go out of the house because they believed that if they collapsed in the street someone would be around to offer help. This anxiety also added an extra barrier to re-engaging with social life, for example, by reducing confidence in previous abilities:
"I don't drive long distances anymore because it makes me too anxious and I feel unsafe" (ptF9).
Some said that they felt unsafe crossing the road, and had become more jumpy at the sound of unexpected loud bangs and were generally more ‘nervy’. One carer described how her housebound husband's significant disability caused frustration and depression, and left him with no motivation, or enthusiasm to live:
"He just wants to give up, and is waiting to go" (caF1).
Stigma and isolation. Most participants felt the general public knew very little about the effects of a stroke. A number of people said that they tended not to tell anyone about their stroke unless they were family members or close friends because of perceived stigmatising responses, which added to their psychological and physical isolation:
"They think just because you have had a problem with your brain, you can't be quite right ... It seems to frighten people ... I don't know why she (wife) feels like this, I'm not an invalid" (ptM5).One carer said her housebound husband felt very isolated, as he rarely received visitors, because she felt, people found it difficult to deal with his disabilities and tended to avoid him:
"Nobody wants him anymore" (caF1).Negative attitudes of existing employers, or prospects for securing new employment were also perceived as a problem, particularly for the younger patients. Those still in employment felt that they were treated as if they had ‘the plague’, adding to feelings of social exclusion.
Information needs
The need for information.
The general consensus in all groups and interviews was that more information was needed about what services were available and how they could be accessed. Both patients and carers wanted more comprehensive information about a range of topics, not only living with a stroke and the problems that might arise from it, but also on wider issues such as adaptations to property, benefits advice, appropriate exercise, points of contact, opportunities to network, surviving a stroke and preventing further strokes.
Almost none of the participants knew which agency or organisation to approach for assessments and where appropriate, for funding. Most were unsure which profession offered which service, and there was particular role confusion about the differences between an Occupational Therapist, a Home Care Assessor and a Social Worker. Perhaps, most surprisingly, people were unaware of the existence of support groups such as the Stroke Association:
"The doctor didn't tell me or the specialist who treated me (about the Stroke Association). I suppose they would have done if I'd had had a bad stroke; wheelchairs and all the rest of it" (ptM2).If a person needed advice on who to contact about specific pieces of equipment such as toilet seats or bath aids, the GP was the most common point of contact to ‘start the ball rolling’. Only one carer was aware that the local Neighbourhood Social Services Office could signpost people to appropriate services. Three individuals (all carers) had made their own enquires but described this as frustrating and very time consuming because of ‘hitting bureaucratic walls’, a patient also added
"The people who are supposed to follow us up don't give us any information ... you have to find things out for yourself" (ptF11).
One carer said that she was disappointed to hear that her husband's case had been ‘closed’ by Social Services when she felt that he still had significant on-going difficulties:
"If I need anything else I'm going to have to go through the system all over again and it was bad enough the first time" (caF3).
However, one patient said that she felt it was each individual's responsibility to ensure that they were aware of how to prevent all illnesses, including strokes, by reading available information. This view however received little support from the wider group:
"That's all very well, having information about how to prevent strokes, heart attacks and such like but they don't tell you what to do when you have had one" (ptM2).
Contact with services
Participants had little current contact with hospital services, and their recent experiences of services were in relation to primary care and social services.
Support for carers. Many patients and carers reported that health care professionals presumed that a spouse would provide all the care that is needed. One carer, however, was happy to accept this situation, and when talking about caring for her husband full time, said:
"We've been married 40 years; you just do it don't you" (caF4).
One carer described a home visit of professionals from the community care team, where there was an implicit assumption that she would provide the majority of the care needed to support her mother without discussion of her own needs.
Carers felt that they had had to become ‘experts’ in dealing with the physical and psychological problems that arose. However, one carer described a situation where she had not been told how to manage her mother's incontinence, which left her feeling incompetent, frustrated and extremely stressed. Another carer told how her husband became increasingly reliant on her after his stroke, and how she had found it difficult to leave the house even for short periods of time. She felt that she had no respite from his constant demands, even during short trips to the newsagents when her husband ‘times her’. She had not pursued the possibility of using a ‘sitting service’ or home care provision as a means of enabling her to take a break, as she knew that her husband would not accept it.
The role of primary care. In general, most participants appeared satisfied with the support they received from their GP and Practice Nurses. They felt they were able to secure appointments without delay, arrange home visits and gain support for applications for adaptations to their home:
"It was my GP who provided me with all the care I needed, the hospital didn't. He saw me every week after I came out of hospital" (ptM4).Another said:
"My doctor is always there. Sometimes even when I haven't got an appointment, he says that if I come back at the end of the surgery he will see me" (ptM1).
A minority of patients and carers were, however, less positive. One male patient said that although early on in the course of his illness the Practice Nurse had visited him every month, gradually over time her visits became two monthly and now were only once every 3 months. This implied notions of an uncaring primary care service, and added to feelings of isolation. A carer of her housebound husband said:
"No Practice Nurse visits unless I fetch them in, and the GP doesn't seem to bother ... It's just a stroke" (caF1).
She similarly described a situation where care appeared to be reactive, rather than proactive. There was no scheduled primary care follow up as support, but rather reactions to active requests such as filling in social service forms for home adaptations that she had sourced herself.
Social services and home care. Approximately half of the individuals who were involved in either the groups or interviews received some degree of support on a regular basis. This was provided by a wide variety of sources including immediate family members or neighbours, privately arranged home help or social services home care staff. The level of support varied from help with activities of daily living, to help with the vacuuming and gardening on a less regular basis. However, the quality of this support varied, with many carers, in particular, describing feeling vulnerable in terms of complaining about standards. One carer, for example reported that she had relied on agency staff to wash and dress her mother before bed, but had discovered that their standards of care were extremely poor. Rather than complain to the agency or social services, she informed them that their services were no longer required. The reasons given for this ‘low-key’ approach was fear of negative repercussions in terms of any future services that may be required.
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Discussion |
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TopAbstractIntroductionMethodologyResultsDiscussionDeclarationsReferences |
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There is little qualitative literature on the needs of prevalent stroke patients in primary care. This study complements the qualitative research carried out with patients at fixed time intervals after their stroke, and provides the first insight into the perspective of a prevalent stroke population in general practice. In this study, three major themes emerged: the prominence of psychological and emotional issues; lack of information available for stroke patients and their carers; and the central role of primary care as a point of contact with services. These results are consistent with quantitative and qualitative studies carried out on ‘incident’ patients.12–15 Surveys have shown that emotional, psychological and social problems persist up to 5 years after stroke, and that patients and carers 2–3 years post-stroke may be unaware of available services.4 Bisset et al.16 found that both stroke patients and their carers often turn to their GP for support and advice (even if a non-medical matter), as they felt that they could help them the most. The themes of psychological and emotional issues and poor information provision have been identified in previous qualitative studies of longer term problems facing ‘incident’ stroke patients.3 It is an interesting and important finding that the problems of the ‘prevalent’ patients in this study are similar to those identified in the ‘incident’ patient studies. This suggests that patients with stroke have persisting problems that are not being addressed by health professionals as well as information needs that are neither adequately met by professional or lay forms of information provision including the stroke charities. Interestingly, whilst patients report these issues they remain largely supportive of their General Practitioners. This could represent reticence on the part of patients to criticise general practice in the focus groups. Our identification of these needs in a prevalent as well as incident population implies ongoing need many years after the initial cerebrovascular event emphasising the need to address them when planning primary care based services for the prevalent stroke population.
Strengths and limitations of the study
This study is the first to utilise a truly ‘prevalent’ stroke population, rather than patients selected from hospital discharge, as in many ‘incident’ studies. Although only 33 (8%) of the potential patient population were recruited, and all of the carers were female, they were sampled from a representative General Practice population. The sampling frame also set out to include the more disabled stroke patients, including people in residential care settings. However, it is likely those who were able to attend the focus groups had different needs from those who declined to participate, particularly in terms of their physical health.
Although only six focus groups, and two interviews took place, data saturation was felt to be complete at that stage, perhaps reflecting the low expectation of involvement and choice in health care of this population of patients and carers. It may also reflect the fact that a minority of patients, particularly those in residential homes, had some difficulty in communicating fluently, and required time and positive encouragement to express their views. Nevertheless, despite the small sample size, our principal results are consistent with the existing literature, suggesting they are generalisable to the wider prevalent stroke population.17
Service provision implications
This study suggests that people who have had strokes, sometimes many years ago, report ignorance both about their stroke and services that are available to meet their continuing problems. Since primary care appears to be an important point of contact for stroke patients and their carers, the results suggest that GPs should have ready access to information about local services available such as housing adaptations, home care arrangements and support groups. The wider primary care team also needs to be alert to psychological and emotional problems, particularly anxiety and lack of self-confidence that these families may experience.
Primary Care could also have a significant role to play in helping to address the social exclusion faced by many stroke patients and carers. Exclusion appears to be occurring at a number of different levels. The stigma associated with a stroke may lead to physical exclusion in the workplace and from friends and social support networks. The physical consequences of the illness itself can lead to difficulty in interacting in an ‘outside’ environment that is largely built for the able-bodied. Patient (and carer) choice, now a central mantra of the modernisation policy agenda, is also noticeable by its absence.18 Against this societal and policy context, lack of information about services from primary care and lack of involvement in decision making in the consultation itself appear to compound exclusionary practices.
The requirement for Primary Care to establish stroke registers presents an opportunity for systematic review of the needs of prevalent stroke patients and their families. Such reviews are being encouraged, and indeed remunerated by the Quality Framework of the new GP contract (GMS 2), though it is important that such reviews focus not only on secondary prevention (GMS 2 contract), but also on the longer-term needs of care and support, and on factors that may promote social inclusion. This reinforces the recommendation of the National Clinical Guidelines for Stroke that there is regular review of psychosocial and support needs.10 The solutions to these problems are however, not clear-cut. Trials of interventions of giving information leaflets or information packs have shown equivocal benefit,19,20 and while family support workers have been of some benefit to carers,21,22 they are only available for the first year after stroke, and are not therefore available for this prevalent population. New innovative models of care that address these issues for people with prevalent stroke need to be developed.
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Declarations |
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The South Birmingham Local Research Ethics Committee approved the study. The Stroke Association funded the research.
Conflicts of interest: none
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Acknowledgments |
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The Stroke Association funded the research. We would also like to acknowledge the support of the Midlands Research Practices Consortium (MidReC), in lending excess service costs via Support for Science Funding, and the support of the seven practices that took part in the study. A National Primary Care Researcher Development Award supported RM whilst this research was carried out.
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References |
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