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doi:10.1093/fampra/cmi098Family Practice Advance Access published on 24 November 2005
What do stroke patients and their carers want
from community services?
R Hare, H Rogers, H Lester, RJ McManus and J Mant
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.
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
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.
Two out of three patients survive their first stroke, but
many are left with long-term disability and consequent
needs for health care.1The National Service Frame-
work (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’.2In 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.3,4reviewed both the qualitative
and the quantitative literature. The studies they found
focussed on the longer-term problems of people fol-
lowed up with a new stroke (‘incident’ cases). In Pri-
mary 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
Potentially, the problems faced by these two popu-
lations 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 relat-
Received 20 April 2005; Accepted 26 October 2005.
University of Birmingham, Primary Care, Clinical Sciences
Correspondence to Dr Jonathan Mant, Department of
Birmingham, Primary Care, Clinical Sciences Building,
by guest on November 7, 2015
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.10The
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,21,22they 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.
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
research was carried out.
The South Birmingham Local Research Ethics Com-
mittee approved the study. The Stroke Association
funded the research.
Conflicts of interest: none
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