“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

Abstract

IntroductionSelf-management programs for spinal cord injury (SCI) are a growing adjunct to traditional healthcare services aiding individuals with SCI in learning and managing symptoms and medical care. A benefit of self-management programs is that they can be facilitated by peers, offering a unique lived experience of adjusting to and managing SCI. While a growing body of literature highlights the effectiveness of peer led programs, there is limited understanding of how individuals engage with peer programs or critical components of peer support. The current study seeks to understand how individuals engaged with peers in the context of a self-management program.MethodsSecondary qualitative analysis of online forum posts resultant from a peer led self-management course for SCI.ResultsContent analysis revealed several themes of how participants engaged with members of the group, including skill building, resource sharing, and problem solving. A process level theme of emotional connection to others living with similar SCI-related challenges was defined as “bearing witness.” Participants commented frequently that groups were the first time they engaged with a community with lived experience, and shared experience was frequently highlighted in the responses from individuals as one of the most unique and important aspects of the intervention.DiscussionThemes identified suggest that bearing witness was a critical component of peer led intervention. While self-management content provided structure for engagement and discussion, participants report that connectedness and shared experience made content more impactful and relevant. Future research should examine if alignment of peer and participant experience increases the impact of interventions and explore if this theme is important for other chronic medical populations.