Feasibility of a Community-Based, Online, Peer-Supported Spinal Cord Injury Self-management Intervention: Protocol for a Pilot Wait-Listed Randomized Trial.

BACKGROUND: People with spinal cord injury (SCI) report feeling unprepared to manage their disability upon discharge to the community. This situation is exacerbated when they return to settings where self-management support and resources are sparse, thus increasing the risk of costly secondary conditions and rehospitalizations. These factors make a compelling case for implementing innovative community-based SCI self-management programs that empower and engage individuals with SCI. Using a community-engaged research (CEnR) approach, we developed a peer-supported SCI self-management intervention, known as PHOENIX (Peer-supported Health Outreach, Education, and Information Exchange), which integrates online educational content and support from peer navigators (PNs) through telehealth, to promote health and community participation after SCI. OBJECTIVE: The objective of this pilot study is to evaluate the feasibility and acceptability of PHOENIX and the study design, and to obtain estimates of the variability of relevant outcome measures. METHODS: We conducted a pilot randomized waitlist-controlled trial (n=30) in collaboration with the South Carolina Spinal Cord Injury Association (SCSCIA), our long-standing community-based nonprofit organization research partner. We recruited 4 PNs through our SCSCIA collaboration using its existing network of trained peer mentors. Our study design supported comparison of the following 2 randomly assigned groups: PHOENIX intervention group and waitlist enhanced usual care (EUC) group. The PHOENIX intervention was administered online by PNs over 16 weeks through scheduled "video visits." The EUC group participated in the study for 16 weeks with usual community services and no navigation, and received 4 monthly newsletters from the SCSCIA on a variety of SCI-relevant topics. At the end of the waitlist period, the waitlist EUC group received the full PHOENIX intervention. Measures of feasibility included PN and participant recruitment and retention, PN workload, protocol adherence, and incidence of technical issues. We conducted qualitative interviews with participants and PNs to evaluate the acceptability of PHOENIX and the study design. Outcome measures, including community participation, quality of life, and the occurrence and subjective impact of medically serious secondary conditions and rehospitalizations, were assessed at baseline after randomization and at subsequent time points to allow between-group comparisons. RESULTS: PN hiring and training were completed in August 2018. Recruitment began in November 2018. A total of 30 participants were recruited across South Carolina, and 28 participants completed follow-up by August 2020. An analysis of the results is being finalized, and the results are expected to be published in 2023. CONCLUSIONS: This study will provide valuable information to guide future research seeking to address unmet self-management needs and improve outcomes in individuals with SCI. Feasibility findings of this study will provide evidence from CEnR guided by people with SCI and SCI service providers to inform further development, testing, and dissemination of effective and scalable self-management strategies for people with SCI. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR1-10.2196/42688.

Translating a spinal cord injury self-management intervention for online and telehealth delivery: A community-engaged research approach.

Objective: To develop educational content and pilot test the use of tablet computers (iPads), online content management platform (iTunes U) and video conferencing (FaceTime) for delivery of a peer supported, spinal cord injury self-management intervention, using a community-engaged research approach. Design: Cross-sectional convenience sampled pilot study; evaluation using a combination of observation and questionnaires. Setting: Community-based. Participants: Individuals with SCI (n = 10) recruited from the community. Interventions: Participants engaged in a hands-on evaluation of the educational content and technology. Outcome Measures: Usability and acceptability of educational content and technology. Results: Participants were receptive and satisfied with the iPad and iTunes U platform and the video chat experience. Statements by our participants demonstrated a clear preference for interactive and multimedia platforms to promote engagement with educational materials. The use of FaceTime to facilitate contact between the participant and PN demonstrated satisfactory usability and acceptability. The hands-on evaluation process highlighted the need for consideration of connectivity for rural participants and assistive technology needs. Conclusion: Our community-engaged research approach and evaluation processes provided direct user feedback on the online and telehealth implementation of PHOENIX that will guide development of the remaining educational content, and testing of the intervention in a future feasibility trial.

A community-based participatory research approach to the development of a Peer Navigator health promotion intervention for people with spinal cord injury.

BACKGROUND: Recent trends indicate research targeting outcomes of importance to people with disabilities, such as spinal cord injury (SCI), may be best informed by those individuals; however, there are very few published rehabilitation intervention studies that include people with disabilities in the research process in a role beyond study participant. OBJECTIVE: To describe a community-based participatory research (CBPR) approach to the development and pilot testing of an intervention using community-based Peer Navigators with SCI to provide health education to individuals with SCI, with the goal of reducing preventable secondary conditions and rehospitalizations, and improving community participation. METHODS: A CBPR framework guides the research partnership between academic researchers and a community-based team of individuals who either have SCI or provide SCI-related services. Using this framework, the processes of our research partnership supporting the current study are described including: partnership formation, problem identification, intervention development, and pilot testing of the intervention. Challenges associated with CBPR are identified. RESULTS: Using CBPR, the SCI Peer Navigator intervention addresses the partnership's priority issues identified in the formative studies. Utilization of the framework and integration of CBPR principles into all phases of research have promoted sustainability of the partnership. Recognition of and proactive planning for challenges that are commonly encountered in CBPR, such as sharing power and limited resources, has helped sustain our partnership. CONCLUSIONS: The CBPR framework provides a guide for inclusion of individuals with SCI as research partners in the development, implementation, and evaluation of interventions intended to improve outcomes after SCI.