Participation in social and leisure activities while re-constructing the self : understanding strategies used by stroke survivors from a long-term perspective

Purpose: To further understand social and leisure (SL) participation after stroke and how it can be supported in a long-term perspective, this study aims to deepen the understanding of strategies used by long-term stroke survivors in relation to SL activities. Materials and methods: The study has a qualitative design, using a grounded theory approach, and is based on in-depth interviews with 10 persons who had a stroke 15 years ago and four of their family members. Results: The findings comprise nine different strategies used by the participants. These had two overarching purposes; to protect and re-construct the post-stroke self and to enable participation in valued SL activities despite challenges. The findings are summarized in one overarching theme: “Employing different strategies to balance costs and rewards of engagement in social and leisure activities”. Conclusions: Strategies for SL participation involves balancing different priorities in life and can change over time as they are continuously influenced by various personal and environmental conditions. These findings contribute to an improved understanding of why and how people hold on to activities, give up activities and find new activities after a stroke. It also highlights the need for a long-term perspective on stroke rehabilitation and support.IMPLICATIONS FOR REHABILITATION Re-engagement in social and leisure activities after stroke is a long-term process and various types of support may be needed during different stages of recovery and adaptation. Successful rehabilitation interventions build on an understanding of each individual’s priorities, goals and strategies and how these may change or manifest over time. Special attention should be given to the individual’s perception of costs and benefits in relation to engagement in activities, and the role that it has for the person’s identity. By providing knowledge and supporting the use of adequate coping strategies, rehabilitation professionals can help patients find a new and accepted post-stroke identity