The perspectives of spouses of stroke survivors on self-management – a focus group study

Abstract

Purpose: This qualitative study explored how stroke survivors’ spouses described their own self-management, their partner’s self-management post-stroke and how they had been supported in developing self-management.

Method: Focus group interviews were conducted with 33 spouses of stroke survivors 34–79 years of age. A constant comparative framework was used for the analysis.

Result: Stroke also affected the spouses, gave changes in their relationships and challenged in being a caregiver beside being partner. They felt burdened, lonely, sad, and guilty. To manage themselves, many participants created time for themselves. For most spouses, self-management was connoted with co-management because they perceived their partners were not able to manage themselves completely post-stroke. They often felt lost after their partners came home and reported that they learned how to coach their partners post-stroke by trial and error, without much professional support. Moreover, many spouses experienced informal peer support as helpful.

Conclusion: Spouses of stroke survivors should be involved as soon as possible in stroke-rehabilitation and continue at home post-discharge. In addition to enhancing the spouses’ skills in caregiving and supporting self-management, stroke survivors’ spouses also need support in their own emotional and role management. Moreover, peers can play a role in rehabilitation post-stroke.

Implications for Rehabilitation

• Spouses of stroke survivors should be considered as full participants of stroke-self-management programs to enhance their skills in caregiving and supporting self-management.

• Stroke survivors’ spouses need support in their own emotional and role management.

• Peer support can play a role in rehabilitation post-stroke for stroke survivors as well as their spouses.

Keywords:

• Stroke
• self-management
• role management
• spouses
• caregivers

Acknowledgements

We are grateful to the spouses of stroke survivors who were willing to share their stories with us. Furthermore, we thank Vienna Brand (VB), Zoë Fleuren (ZF), Leonie Kanning (LK), and Maaike Kroon (MK), who assisted in the organisation of the interviews and analysis of the data.

Disclosure statement

The authors report no declarations of interest.

Funding

This study was supported by a PhD grant from the HAN University of Applied Sciences, Nijmegen, The Netherlands.