Abstract

Despite recent improvements in Swedish stroke care some patients still experience a lack of support and follow-up after discharge from hospital. In order to provide good care according to the National Board of Health and Welfare, systematic evaluations of stroke care must be performed. Quality indicators in the national guidelines could be useful when measuring quality of care in all parts of the stroke care chain. To investigate how people with stroke experienced their care, rehabilitation, support, and participation from hospital to community care. Qualitative interviews were performed with 11 people in 2009-2010 covering their experiences of care, rehabilitation, support, and participation. The interviews were analysed with qualitative content analysis. The interviewees were satisfied with their hospital care, but reported both positive and negative experiences of the continuing care. Most of them appreciated intense, specific, and professional rehabilitation, and had experienced these qualities in the rehabilitation they received in most parts of the stroke care chain. Those who received support from the community services expressed satisfaction with the staff, but also felt that autonomy was lost. Several did not feel involved in the health care planning, but instead relied on the judgement of the staff. To ensure high quality throughout the whole stroke care chain, people with stroke must be invited to participate in the care and the planning of care. To offer evidence-based stroke rehabilitation, it is important that the rehabilitation is specific, intense, and performed by professionals, regardless of where the rehabilitation is performed. A changed view of the patient's autonomy in residential community services should be developed, and this process must start from the staff and residents.

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