JMIR Publications

ABSTRACT

Background:

People with spinal cord injury 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 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 approach, we developed a peer-supported SCI self management intervention, known as PHOENIX, which integrates online educational content and support from Peer Navigators (PN) through telehealth, to promote health and community participation after SCI.

Objective:

The objective of this pilot study was to evaluate the feasibility and acceptability of PHOENIX and the study design, and to obtain estimates of 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. PHOENIX was administered online by the PN over 16 weeks through scheduled “video visits”. 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 acceptability of PHOENIX and study design. Outcome measures were administered at baseline after randomization and subsequent timepoints to allow between groups comparisons.

Results:

Peer Navigator hiring and training was completed, and the study was approved by the Medical University of South Carolina Institutional Review Board 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; results are expected to be published in late 2022.

Conclusions:

This study will provide valuable information to guide future research to improve outcomes in individuals with SCI through the identification and development of strategies to address unmet self-management needs. Demonstrating success with this approach may lead to wide-scale dissemination of this intervention, and thus decrease disparities related to disability and access to community resources that exist in the participants’ communities.