Informal primary carers of stroke survivors living at home-challenges, satisfactions and coping: A systematic review of qualitative studies

Purpose. To summarize qualitative studies from the last decade that focus on experiences of caring for stroke survivors and to describe challenges, satisfactions and coping strategies. Methods. A systematic review of qualitative studies identified from English language medicine, nursing and psychology databases from 1996-2006 was undertaken. Results. Seventeen qualitative studies fitting the inclusion and exclusion criteria, mostly from the USA, were identified. All used carer interviews. These studies corroborate the quantitative research, commonly describing difficulties including emotional responses, uncertainty and associated information and training needs. However, compared with quantitative research, qualitative studies provide a more detailed, complete picture of carers' experiences and identify additional areas including role and relationship changes, positive outcomes and coping strategies. Conclusions. Qualitative studies add significantly to our understanding of carers' experiences. Caring for stroke survivors is often challenging but focusing on the difficulties and not drawing attention to successful management strategies and satisfaction reported by carers, limits understanding and reduces the chances of providing appropriate support. Future qualitative research should consider the implications of the timing of collection more carefully and should move away from simple content or thematic analysis which tends to emphasize similarities amongst carers and should now focus on understanding carer diversity. Acknowledging this diversity should maximize the chances of providing appropriate support.