Carer experiences of life after stroke – a qualitative analysis

Abstract

Aims and objectives. Carers' experiences of caring for a stroke survivor were explored, including reactions and changes in their lives.

Method. A phenomenological approach was taken to the collection and analysis of data. Semi-structured interviews lasting an average of 43 min were carried out with nine informal carers in their own homes. All were married to someone who had survived a stroke.

Results. An overarching theme emerged, entitled: ‘lives turned upside-down’. It took time for participants to understand the long-term impacts of stroke. Carers experienced increased caring and domestic workloads alongside reduced participation and altered expectations of life. They found emotional and cognitive changes in their partners particularly distressing, and would have valued more information and help with adjusting to the increased emotional, physical and cognitive workload of caring.

Conclusions. It is important to support carers of people who have survived a stroke in adjusting to their changed lifestyles. This may affect their quality of life as well as sustainability of caring, and requires further research.

Keywords:

• Carer
• stroke
• functional electrical stimulation

Acknowledgments

This study was funded by the Centre for Integrated Healthcare Research. The authors wish to thank all study participants, and Caroline McGuire for their contributions to design and delivery of the FES service, and to the original study concept. Lastly, thanks go to Dr. Smith and the Lothian Stroke MCN for financial support of the FES Service.