Satink, Ton

Purpose: This qualitative study explored how stroke survivors' spouses described their own self-management, their partner's self-management post-stroke and how they had been supported in developing self-management.; Method: Focus group interviews were conducted with 33 spouses of stroke survivors 34-79 years of age. A constant comparative framework was used for the analysis.; Result: Stroke also affected the spouses, gave changes in their relationships and challenged in being a caregiver beside being partner. They felt burdened, lonely, sad, and guilty.

In Dutch policy and at the societal level, informal caregivers are ideally seen as essential team members when creating, together with professionals, co-ordinated support plans for the persons for whom they care. However, collaboration between professionals and informal caregivers is not always effective. This can be explained by the observation that caregivers and professionals have diverse backgrounds and frames of reference regarding providing care.