Loss of autonomy, control and independence when caring: A qualitative study of informal carers of stroke survivors in the first three months after discharge

Abstract

Purpose. Stroke has far reaching effects on both stroke survivors and their informal carers. Research has highlighted changes in autonomy of stroke survivors, but insufficient focus has been put on the associated reduced control and independence of their informal carers. This study investigates the experiences of informal carers of stroke survivors from discharge to 3 months later.

Method. A purposive sample of 31 informal carers was interviewed in depth just prior to discharge, 1 month and 3 months post-discharge. Interviews lasted 30–90 min and were audio-taped and transcribed. Data analysis was ongoing starting during data collection and ending with themes that described and helped understand carers' experiences.

Results. Carers described reductions in their autonomy and independence but also over time identified strategies to manage these changes and to increase control in their lives. These strategies included selection, optimisation, compensation, asking for and accepting help and negotiation. Some carers, especially older carers and those with prior caring experience, were less likely to describe changes in autonomy and control.

Conclusions. Carers' reduced autonomy and independence should be recognised by practitioners and service providers. Helping carers to negotiate choice and control over the support offered could help increase their autonomy and independence. To offer improved support to these carers, greater attention should to given to the diversity of their situations and experiences.

Keywords:

• Carer
• stroke
• autonomy

Acknowledgements

The authors would like to thank St George's Healthcare NHS Trust who funded the study and the carers and stroke survivors who willingly gave up their time and made the research possible and the multi-disciplinary teams who facilitated meeting the families.