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What Is Shared in an Online Peer-Support Group Run by Stroke Survivors? An Exploratory Study With a Participatory
Malin Tistad1,2, Lill Hultman1,3,4, Jeanette Nelson1
1Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Stockholm, Sweden.
Summary
Stroke survivors find valuable peer support in online Facebook groups, sharing diverse experiences and challenges. These groups offer a space for mutual understanding and knowledge exchange, aiding recovery and daily life navigation.
Area of Science:
- Social Sciences
- Health Sciences
- Rehabilitation Medicine
Background:
- Stroke survivors often experience lifelong disabilities impacting their lives and their loved ones.
- Online social media groups offer peer support for individuals with shared experiences.
- Limited research exists on stroke survivor-initiated and managed online peer support groups.
Purpose of the Study:
- To explore and describe the content shared in posts and comments within a Facebook group for stroke survivors.
- To understand the peer support dynamics in a self-initiated and managed online community for stroke survivors.
Main Methods:
- A qualitative, exploratory study involving stroke survivors as co-researchers.
- Data collected from a Facebook group over 3 months, analyzing posts and comments.
- Inductive qualitative content analysis applied to the collected data.
Main Results:
- Five categories and 11 subcategories emerged, detailing members' experiences.
- Key themes include navigating daily life with stroke consequences, emotional struggles, progress, societal navigation, and continuing life post-stroke.
- Discussions encompass challenges, everyday situations, and requests for peer experiences.
Conclusions:
- Online forums facilitate a broad range of discussions relevant to stroke survivors and their significant others.
- Peer-to-peer online support offers a valuable context for sharing experiences, knowledge, and developing experiential knowledge.
- Rehabilitation professionals can promote online peer groups, assess social media use, and support survivors in utilizing these platforms.
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