Loss after stroke: Survivor and carer perceptions and long-term support needs. A proposed study

Abstract

Background: Stroke survivors and carers (S&C) face continuing life changes and transitions. The meaning and experience of surviving stroke involves adjusting to various losses: personal (e.g. self); interpersonal (e.g. social relationships, social life); or concrete (e.g. income, job) loss. Effective strategies for coping with stroke-related loss and grief need to be identified in order to support S&C.We have proposed a longitudinal study of perceptions of stroke-related loss and long-term health, social and psychological support needs for S&C. Methods: This qualitative study will explore perceptions of loss through interviews and focus groups. Phase 1 will recruit 8 survivors and 8 carers for interviews at 5-6 months post stroke, and a further 20 survivors and 20 carers for focus groups at 5-6 months post stroke; these will be repeated at 12 months. Phase 2 will recruit a further 8 survivors and 8 carers for interviews at 5+ years post stroke and a further 20 survivors and 20 carers for focus groups at 5+ years. Interviews will explore the lived experiences of loss for individuals and couples, and how these change over time. Focus groups will explore how S&C have coped with loss over time, the support they have received and their unmet support needs. Results: Data will be audio-taped and transcribed verbatim; focus group data will be analysed using thematic content analysis to identify common and recurrent themes. Interview data will be analysed using a phenomenological approach. Anonymised data will form the basis of a short DVD of survivor and carer experiences, using a range of actors and volunteers to tell the stories. This will be a powerful, flexible and meaningful tool to disseminate the data whilst ensuring anonymity. Discussion: The study will provide data about how stroke affects lives of S&C, their developing support needs and adopted coping mechanisms. The DVD will be used to educate health and social care professionals, volunteers, S&C about life after stroke.