What do stroke patients and their carers want from community services?

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.