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

• Published in: Disability and rehabilitation 2015-01, Vol.37 (3), p.223-230
• Main Authors: Satink, Ton, Cup, Edith H. C., de Swart, Bert J. M., Nijhuis-van der Sanden, Maria W. G.
• Format: Article
• Language: English
• Subjects: Aged; Aged, 80 and over; Female; Focus group; Focus Groups; Health Services Needs and Demand; Humans; Learning; Longitudinal Studies; Male; Middle Aged; Patient Discharge; Perception; role management; Self Care - psychology; self-management; stroke; Stroke Rehabilitation; Survivors
• ISSN: 0963-8288; 1464-5165
• DOI: 10.3109/09638288.2014.918187

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 RehabilitationThis 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.