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.
Family Practice (Impact Factor: 1.86). 03/2006; 23(1):131-6. DOI: 10.1093/fampra/cmi098
Source: PubMed


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.
To identify the long-term support needs of patients with prevalent stroke, and their carers identified from practice stroke registers.
Patients and their carers were invited to attend focus groups at the university, a nursing home or in the community.
Seven practices in South Birmingham. Adults (18+) with a validated record of stroke.
Focus groups were audio-taped and data analysed using a constant comparison method.
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.
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.

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    • "In one model, transfer of care and responsibility of post stroke patients became the responsibility of the primary care team, which is supported by community hospital based team [15]. This model also catered for patients with stroke whom never left the care of the GP and were never admitted to hospital during the acute stroke [16,17]. "
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    ABSTRACT: Provision of post stroke care in developing countries is hampered by discoordination of services and limited access to specialised care. Albeit shortcomings, primary care continues to provide post-stroke services in less than favourable circumstances. This paper aimed to review provision of post-stroke care and related problems among Family Medicine Specialists managing public primary health care services. A semi-structured questionnaire was distributed to 121 Family Physicians servicing public funded health centres in a pilot survey focused on improving post stroke care provision at community level. The questionnaire assessed respondents background and practice details i.e. estimated stroke care burden, current service provision and opinion on service improvement. Means and frequencies described quantitative data. For qualitative data, constant comparison method was used until saturation of themes was reached. Response rate of 48.8% was obtained. For every 100 patients seen at public healthcentres each month, 2 patients have stroke. Median number of stroke patients seen per month is 5 (IQR 2-10). 57.6% of respondents estimated total stroke patients treated per year at each centre was less than 40 patients. 72.4% lacked a standard care plan although 96.6% agreed one was needed. Patients seen were: discharged from tertiary care (88.1%), shared care plan with specialists (67.8%) and patients who developed stroke during follow up at primary care (64.4%). Follow-ups were done at 8-12 weekly intervals (60.3%) with 3.4% on 'as needed' basis. Referrals ranked in order of frequency were to physiotherapy services, dietitian and speech and language pathologists in public facilities. The FMS' perceived 4 important 'needs' in managing stroke patients at primary care level; access to rehabilitation services, coordinated care between tertiary centres and primary care using multidisciplinary care approach, a standardized guideline and family and caregiver support. Post discharge stroke care guidelines and access to rehabilitation services at primary care is needed for post stroke patients residing at home in the community.
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    • "In parallel to this, a systematic review of survey studies reporting prevalence and typology of longer term problems has also been conducted [13]. These reviews identify a range of problem categories, including social and emotional consequences which were the largest domains identified, and which appear to persist many years after stroke [14]. More recently, the UK Stroke Association commissioned a needs survey of people who had been living with stroke for between one and five years [15]. "
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    ABSTRACT: There is little evidence of service user preferences to guide the commissioning and improvement of services that support life after stroke. We report the first investigation of patients' and family carers' preferences for community services after stroke using a discrete choice experiment (DCE). Two workshops with patients and family carers (n = 8) explored stroke experiences, identifying attributes important in shaping views about service design, and piloted data collection strategies. Attributes were group versus individual support; service provider; additional support for social and leisure activities; and the total time required to access services. Patients and family carers were recruited six months post stroke-onset (mean 331 days) from four stroke services, and invited to participate in the DCE. Patients' general health (EQ5D) and functional dependence (Barthel Index) were also assessed. Of 474 eligible patients, 144 (30%) expressed an interest in the study, and 80 (56%) of these completed the survey questionnaire. 34 of 74 (46%) family carers recruited through patients completed the DCE. All four attributes were significant in shaping patients preferences for stroke support service delivery (p < 0.05), confirming the interpretation of workshop findings. Patients prefer help and support for emotional needs, communication problems and physical difficulties to be provided on an individual basis; and to be offered additional social and leisure activities that they are able to attend on their own. Patients would appear to prefer that voluntary organisations do not provide these services, although this may be linked to lack of experience of these services. Family carers would prefer help and support in their caring role on a one-to-one basis. Whilst health related quality of life is associated with preference for format of service, results were relatively consistent across sub-groups, with the exception of time since stroke, where social and leisure activities had a greater impact on preferences of established service users. The data provide unique insights into how preferences for community services that support life after stroke are shaped. This information can be used to inform both service re-design, and barriers to implementation that will need to be accounted for in policy shifts towards a more mixed economy of service provision.
    Full-text · Article · Feb 2014 · BMC Health Services Research
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    • "The National Stroke Strategy (Department of Health, 2007) recommends that stroke survivors and their caregivers are provided with a healthcare and social-care review by primary care professionals at key points following their discharge from hospital, and that patients and caregivers have identified the importance of primary care as a first point of contact (Hare et al., 2006). Currently , there is very little evidence on which to base models for providing these reviews. "
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    ABSTRACT: To systematically review studies reporting the effectiveness of various models of follow-up in primary care on a range of outcomes (physical, psychological, social functioning, or quality of life) for survivors of stroke and their caregivers. Stroke is a major cause of disability globally. Current UK policy calls for a primary care-based review of healthcare and social-care needs at six weeks and six months after hospital discharge and then annually. Trials meeting the pre-defined inclusion criteria were identified by the systematic searching of electronic databases. Data were extracted by two independent researchers. Studies were rated using the McMaster University Quality Assessment Tool. Nine randomised controlled trials that met the inclusion criteria were identified. These studies included interventions using stroke support workers, care coordinators or case managers. The methodological quality of the studies was variable, and models of care demonstrated inconsistent working relationships with general practitioners. Patients and caregivers receiving formal primary care-based follow-up did not show any gains in physical function, mood, or quality of life when compared with those who did not. Patients and caregivers receiving follow-up were generally more satisfied with some aspects of communication, and had a greater knowledge of stroke. The limited quality of these studies and the lack of a sound theoretical basis for the development of interventions together highlight the urgent need for high-quality research studies in this area.
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