“There’s always something, and then there’s more”: a qualitative examination of how virtual peer led self-management can create community around the evolving SCI experience

Frontiers in Rehabilitation Sciences, 2024 · DOI: 10.3389/fresc.2024.1377218 · Published: April 29, 2024

Spinal Cord Injury Patient Experience Social Support

Simple Explanation

This study explores how people with spinal cord injuries (SCI) interact with each other in a peer-led, online self-management program. The program, called SCI Thrive, aims to help individuals manage their symptoms and medical care by connecting them with peers, experts, and self-management training. The study found that participants engaged with each other through skill-building, resource sharing, and problem-solving. A key element was the emotional connection and shared experiences, described as “bearing witness,” where participants felt understood and supported by others facing similar challenges. The researchers suggest that this “bearing witness” aspect is crucial for the success of peer-led interventions, making the content more impactful and relevant. They recommend future research to investigate whether aligning peer and participant experiences can further enhance the impact of these programs.

Study Duration

6 Weeks

Participants

158 participants with SCI

Evidence Level

Not specified

Key Findings

1
Participants engaged in skill-building, resource sharing, and problem-solving within the online forum.
2
A process-level theme of emotional connection, termed “bearing witness,” was identified, highlighting the importance of shared experiences and empathy among participants.
3
Participants frequently noted that the groups provided their first experience engaging with a community sharing similar lived experiences with SCI.

Research Summary

This study qualitatively examined peer interactions within an online self-management program for individuals with spinal cord injury (SCI). The analysis revealed themes of resource sharing, skill-building, and problem-solving, alongside a deeper theme of emotional connectedness and shared experience, termed “Bearing Witness.” The study suggests that the emotional support and shared experiences within peer groups are crucial for enhancing the impact and relevance of self-management interventions for individuals with SCI.

Practical Implications

Enhance Peer Support Programs

Focus on fostering emotional connections and shared experiences in peer support programs.

Improve Intervention Receptivity

Utilize the validation from lived experience to increase participant receptivity to educational material.

Promote Community Building

Encourage interventions to coalesce into a community through shared peer interaction.

Study Limitations

1
The study's qualitative analyses have not been linked with quantitative outcomes.
2
The analysis excluded posts by peer leaders, limiting understanding of the origin of discussions.
3
The study population was primarily white, older, and relatively educated, potentially limiting the generalizability of the findings.

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