How is self-management perceived by community living people after a stroke? A focus group study

Abstract

Purpose: Self-management has become an important concept in stroke rehabilitation; however, the way that people post-stroke reflect on the concept of self-management has not yet been studied. This qualitative study explored the reflections of persons post-stroke on self-management, readiness and needs in self-management support. Methods: Focus group interviews were conducted with 16 community living stroke survivors (53–84 years of age). Both verbal questions and photo elicitations were used to collect data. A constant comparative framework was used for the analysis. Result: Participants described their self-management as a complex, long-term, personal learning process. Post-discharge, participants were not ready to self-manage. Aside from individual self-management, participants also mentioned co-management with relatives. Relatives could provide support, but they also limited the development of participants’ self-management skills. Participants missed having professional support post-discharge and would have appreciated additional psychological and emotional support in their process of self-management. Conclusion: Self-management post-stroke is complex. Stroke self-management programmes may be optimised when integrating role and emotional management in addition to medical management. Although readiness to self-manage differs among individuals, support should start as soon as possible and continue post-discharge in people’s personal environments. Self-management programmes should not only focus on self-management of stroke survivors but also on co-management with relatives.

Implications for Rehabilitation

• This study suggests that health care professionals should pay attention to the way patients understand the word and concept of self-management, and need to stress that self-management is not “do-it-yourself”, but is about managing life and health in collaboration with relatives and professionals.

• Self-management programmes become more meaningful for patients if valued activities and roles are the points of departure of the assessment, goal-setting and coaching throughout the process post-stroke.

• Stroke self-management programmes should be delivered in people’s own environments.

• Focus group
• role management
• self-management
• stroke

Acknowledgements

We are grateful to the people who were willing to share their post-stroke experiences with us in this focus group study and during the member check. We also thank Margaretha Brouwer (M.B.), Nikita Hulman (N.H.), Aafke Ruiter (A.R.) and Ruben van Vliet (R.V.), who not only organised the focus groups very effectively but also created an atmosphere that made the participants feel at home and conversant.

Declaration of interest

The authors report no declarations of interest. This study was supported by a PhD grant from the HAN University of Applied Sciences, Nijmegen, the Netherlands.