"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.

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.

SCI Thrive: Impact of a peer-led online self-management program.

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.

Health care access and the Americans with Disabilities Act: A mixed methods study.

BACKGROUND: The Americans with Disabilities Act (ADA) requires that health care entities provide full and equal access to people with disabilities. However, results of previous studies have indicated that the ADA has been largely ineffective at creating systemic change in the delivery of health care. OBJECTIVE: The objective of this study was to examine the current barriers to health care access experienced by people with disabilities under Titles II and III of the ADA. METHODS: This study utilized a mixed methods multiphase design. In phase one, a survey and focus groups were conducted with individuals with disabilities who experienced barriers to health care access. In phase two, key informant interviews were conducted with individuals who had a role in ensuring equal access to health care for people with disabilities. RESULTS: In the current context of health care reform, people with disabilities continue to experience multiple barriers to health care access under Titles II and III of the ADA. However, a notable result is that several provisions of the Patient Protection and Affordable Care Act (ACA) have likely bolstered existing directives implementing requirements for health care access under the ADA. CONCLUSIONS: The results of this study provide additional support for a comprehensive examination of both the national standards for accessible health care and the enforcement of laws that prohibit discrimination on the basis of disability.

Outcomes and Lessons Learned From a Randomized Controlled Trial to Reduce Health Care Utilization During the First Year After Spinal Cord Injury Rehabilitation: Telephone Counseling Versus Usual Care.

OBJECTIVES: To describe the outcomes and lessons learned from a trial of telephone counseling (TC) to reduce medical complications and health care utilization and to improve psychosocial outcomes during the first year after spinal cord injury rehabilitation. DESIGN: Single-site, single-blind, randomized (1:1) controlled trial comparing usual care plus TC with usual care (UC). SETTING: Two inpatient rehabilitation programs. PARTICIPANTS: Adult patients (N=168) discharged between 2007 and 2010. INTERVENTIONS: The TC group (n=85, 51%) received up to eleven 30- to 45-minute scheduled telephone calls to provide education, resources, and support. The UC group (n=83, 49%) received indicated referrals and treatment. MAIN OUTCOME MEASURES: The primary outcome was a composite of self-reported health care utilization and medical complications. Secondary outcomes were depression severity, current health state, subjective health, and community participation. RESULTS: No significant differences were observed between TC and UC groups in the primary or secondary psychosocial outcomes. CONCLUSIONS: This study had a number of strengths, but included potential design weaknesses. Intervention studies would benefit from prescreening participants to identify those with treatable problems, those at high risk for poor outcomes, or those with intentions to change target behaviors. Interventions focused on treatment goals and designed to work in collaboration with the participant's medical care system may lead to improved outcomes.

Use of on-demand video to provide patient education on spinal cord injury.

BACKGROUND/OBJECTIVE: Persons with chronic spinal cord injury (SCI) have a high lifetime need for ongoing patient education to reduce the risk of serious and costly medical conditions. We have addressed this need through monthly in-person public education programs called SCI Forums. More recently, we began videotaping these programs for streaming on our website to reach a geographically diverse audience of patients, caregivers, and providers. DESIGN/METHODS: We compared information from the in-person forums to that of the same forums shown streaming on our website during a 1-year period. RESULTS: Both the in-person and Internet versions of the forums received high overall ratings from individuals who completed evaluation forms. Eighty-eight percent of online evaluators and 96% of in-person evaluators reported that they gained new information from the forum; 52 and 64% said they changed their attitude, and 61 and 68% said they would probably change their behavior or take some kind of action based on information they learned. Ninety-one percent of online evaluators reported that video is better than text for presenting this kind of information. CONCLUSION: Online video is an accessible, effective, and well-accepted way to present ongoing SCI education and can reach a wider geographical audience than in-person presentations.