Stroke: an exploration of the experience of informal caregiving

Abstract

Objective: To explore the experience of caregiving in informal carers of stroke patients.

Design: The research approach was qualitative. Data were collected one year after the stroke occurred using a semi-structured interview. The audio-taped interviews were transcribed and following this process were analysed thematically using constant comparative procedures.

Setting: West of Scotland.

Subjects: Twenty-two informal carers of stroke patients.

Results: The results are presented under the headings: Preparation for discharge/feelings about discharge; The early weeks/months at home; A year of caring; and The future. The main themes identified within these broad areas were as follows: physical preparation; emotional support; the supply of information and advice; and the provision of appropriate services (both social and health service provision).

Conclusions: The data gathered in this small-scale study suggest that the physical and emotional toll associated with caregiving was great. Unfortunately, the help and support provided by the health and social services was often inadequate, inappropriate and poorly tailored to their individual needs. There was little evidence of a seamless flow of care between the secondary and primary care settings.