Exploration of Chronic Self-Management Needs for Individuals with Spinal Cord Injury/Disease

Research Objectives: To explore (1) the facilitators and barriers of people with SCI/D to successfully engage in self-management behaviors and (2) stakeholder perspectives on potential self-management program components and content for intervention development.

Design: The study was a cross-sectional design survey with no follow-up. Participants responded to both a survey and a needs assessment related to self-management for persons with SCI/D.

Setting: The cross-sectional survey and needs assessment were conducted through the University of Missouri- Columbia.

Participants: 38 participants with SCI/D over the age of 18 and living in the community with or without caregiver support responded to the SCISM survey, and 33 completed the needs-assessment. Persons with non-primary SCI diagnoses such as spinal muscular atrophy, spina bifida, and/or transverse myelitis were not included in this sample.

Interventions: The 55-item quantitative Spinal Cord Injury Self-Management (SCISM) Survey and Needs Assessment was developed based on qualitative themes found in SCI/D literature and spans five domains: Ability, Accessibility, Activities/Health, Interest, and Motivation.

Main Outcome Measures: The SCISM Survey and Needs Assessment.

Results: Participants indicated that primary barriers to successful SM included transportation/distance to healthcare or related appointments, presence of current secondary health conditions, and lack of local resources. Participants noted that virtual self-management programs with emphasis on psychological health/coping were preferred and that they would want to interact with a healthcare provider and peers.

Conclusions: Participants’ responses indicated interest in a self-management program tailored to SCI/D needs and the results from this survey highlighted some of the integral aspects they expect of such a program, as well as what barriers exist that limit their current participation. One of which being transportation and lack of local specialists or healthcare resources for those with SCI/D. A potential solution for this is the adoption of a telehealth-based virtual intervention at the community level. These findings should guide the development of a SM program tailored to chronic needs of SCI/D while incorporating programmatic structures that minimizes barriers to participation to reduce the prevalence and impact of SHC on the SCI/D population.

Author(s) Disclosures: N/A