ABSTRACT
Introduction: Self-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. Methods: Secondary qualitative analysis of online forum posts resultant from a peer led self-management course for SCI. Results: Content 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. Discussion: Themes 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.
ABSTRACT
OBJECTIVE: To test the effectiveness of a peer-led online self-management program for individuals with spinal cord injury (SCI). DESIGN: Randomized waitlist control trial. SETTING: Community. PARTICIPANTS: 184 adults with SCI. INTERVENTIONS: SCI Thrive is a peer-led self-management program with self-paced online content and video-sessions for live discussion. OUTCOME MEASURES: Perceived quality of life, self-efficacy for health, participation. RESULTS: A total of 97 individuals (86 randomized plus 9 assigned to the final group) were assigned to treatment and 86 randomized to the waitlist. Participants were 51 years old on average (SD = 14.9), with 58% male, mean of 15.5 (SD = 14.0) years injured, with 59% cervical injuries and 64% incomplete injuries. The treatment group had significantly higher scores on CHART occupational subscale (P = .022), but no other differences were found at the end of 6 weeks. Analysis of all participants who completed SCI Thrive showed significant increase in self-efficacy between baseline (6.32) and 6 weeks (6.81; P < .001) which was maintained at 3 months post treatment (6.83; P = .001). Those who were more engaged in SCI Thrive reported higher quality of life (P = .001), self-efficacy (P = .007), and increased mobility on the CHART (P = .026). CONCLUSION: SCI Thrive is a highly accessible program for individuals with SCI and shows promise for improving self-efficacy. Strategies to increase engagement should be added to maximize benefits. Measurement tools may have been impacted by COVID-19 pandemic. Further research on the efficacy of SCI Thrive is needed given feedback on benefit of a group focus area, such as on physical activity.
