Needs Assessment of Self-Management for Individuals With Chronic Spinal Cord Injury/Disease

Plain Language Summary Persons with Spinal Cord Injury/Disease (SCI/D) experience secondary health conditions to a higher degree than the general population which impacts their function, quality of life, and lifespan. The factors that limit or support participation in self-management behaviors and programs were explored and we asked people with SCI/D what they would want out of a self-management program tailored to their needs. Results showed that virtual programs with a both group and individual sessions with a strong mental health component were preferred. Since the 1980s, survivorship for persons with spinal cord injury/disease (SCI/D) has significantly improved; however, life expectancy remains lower than the general population due to secondary health conditions (SHCs) that lead to decreased function and death. This study explored (1) facilitators and barriers to engaging in self-management (SM) for persons with SCI/D and (2) stakeholder perspectives on potential SM program components and content for intervention development. Around 38 participants with SCI/D responded to this cross-sectional study and needs assessment conducted at the University of Missouri, Columbia. Responses were analyzed to determine descriptive statistics. Participants indicated barriers to SM include transportation/distance, presence of SHCs, and a lack of local resources. Participants noted that virtual SM programs with strong psychological health/coping components were preferred. These findings should guide the development of an SM program tailored to SCI/D to reduce the prevalence and impact of SHC on the SCI/D population.