Health expectations : an international journal of public participation in health care and health policy · 2025
What Is Shared in an Online Peer-Support Group Run by Stroke Survivors? An Exploratory Study With a Participatory Approach.
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Tistad Malin, Hultman Lill, Nelson Jeanette, Sandman Fredrik, Åkerlund Mikael, Schön Ulla-Karin, von Koch Lena
Аннотация
BACKGROUND: Many stroke survivors face disabilities that can have a substantial lifelong impact on both their own and their significant others' life situations. Online groups on social media can serve as forums for peer support among people sharing a common experience. However, there is limited knowledge about online peer-support groups for people living with the consequences of stroke that are initiated and managed by stroke survivors themselves.
OBJECTIVE: The aim of this study was to explore and describe what stroke survivors and their significant others share in posts and comments in a Facebook group for stroke survivors, initiated and run by stroke survivors.
METHODS: In this participatory, exploratory and qualitative study, three stroke survivors, engaged as co-researchers with no previous research experience, identified Facebook as an important context for sharing experiences and peer support. Data were collected by summarizing posts and comments from a Facebook group over 3 months and analyzed using the principles of inductive qualitative content analysis.
RESULTS: In total, 5 categories and 11 subcategories were created. The categories Narrating About Everyday Life with the Consequences of Stroke, Dealing with the Emotional Struggle of Poststroke Life, Making Progress and Enjoying Everyday Life, Navigating Societal Services and Societal Demands and Continuing Everyday Life describe narratives, questions and requests for other members' experiences related to challenges and situations that the group's members faced post-stroke.
CONCLUSION: We conclude that there is considerable breadth in the topics and issues discussed in the online forum, reflecting that a stroke affects many areas of life for both stroke survivors and their significant others. Furthermore, online peer-to-peer support for stroke survivors have the potential to provide a context for sharing experiences and knowledge, and for developing experiential knowledge. Clinical implications are that rehabilitation professionals can inform stroke survivors about the existence of online peer-to-peer groups, include the ability to use social media in assessments of activity performance, and, if relevant, support stroke survivors' use of social media.
PATIENT OR PUBLIC CONTRIBUTION: Stroke survivors identified Facebook as a context for the study. They collaborated in data collection, analysis, interpretation and discussion of findings and are co-authors.
OBJECTIVE: The aim of this study was to explore and describe what stroke survivors and their significant others share in posts and comments in a Facebook group for stroke survivors, initiated and run by stroke survivors.
METHODS: In this participatory, exploratory and qualitative study, three stroke survivors, engaged as co-researchers with no previous research experience, identified Facebook as an important context for sharing experiences and peer support. Data were collected by summarizing posts and comments from a Facebook group over 3 months and analyzed using the principles of inductive qualitative content analysis.
RESULTS: In total, 5 categories and 11 subcategories were created. The categories Narrating About Everyday Life with the Consequences of Stroke, Dealing with the Emotional Struggle of Poststroke Life, Making Progress and Enjoying Everyday Life, Navigating Societal Services and Societal Demands and Continuing Everyday Life describe narratives, questions and requests for other members' experiences related to challenges and situations that the group's members faced post-stroke.
CONCLUSION: We conclude that there is considerable breadth in the topics and issues discussed in the online forum, reflecting that a stroke affects many areas of life for both stroke survivors and their significant others. Furthermore, online peer-to-peer support for stroke survivors have the potential to provide a context for sharing experiences and knowledge, and for developing experiential knowledge. Clinical implications are that rehabilitation professionals can inform stroke survivors about the existence of online peer-to-peer groups, include the ability to use social media in assessments of activity performance, and, if relevant, support stroke survivors' use of social media.
PATIENT OR PUBLIC CONTRIBUTION: Stroke survivors identified Facebook as a context for the study. They collaborated in data collection, analysis, interpretation and discussion of findings and are co-authors.