Self-management for chronic spinal cord injury : developing and implementing the spinal cord injury self-management program
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Individuals with spinal cord injury (SCI) experience a higher rate of secondary health conditions (SHCs) compared to the general population. These SHCs lead to costly healthcare treatment, hospitalizations, poorer quality of life, decreased wellbeing, and even death. Self-management (SM) is a proven approach to help reduce the negative impacts of various chronic diseases, but formal SM programs have not been successful when trialed with the SCI population. This dissertation aimed to explore facilitators and barriers to SM behaviors and SM program involvement, understand the needs of persons with chronic SCI to successfully engage in SM, develop a SM program, and implement that program to assess feasibility, acceptability, estimate effect, and understand participants' experiences of engagement. This dissertation includes a three-study series. The first is a cross-sectional quantitative survey exploring chronic needs, facilitators, and barriers for people with SCI related to SM. The results of this survey informed the development of the Spinal Cord Injury Self-Management (SCISM) Program. In the second study, we piloted the SCISM Program and qualitatively evaluated the experiences of participants. And in the final study, we quantitively assessed the feasibility, acceptability, and the estimated effects of the SCISM Program. Overall, people with SCI want to be better at SM and prefer virtual programs that involve peers and address mental health. Participants felt that the SCISM Program fostered community, accountability, and spurred learning and habit changes. Lastly, participants agreed that the SCISM Program was feasible, acceptable, and produced moderate and large positive effects on the reduction of SHCs and goal attainment. The SCISM Program should be further evaluated through efficacy trials to understand its potential as a tailored SCI SM Program to reduce SHCs and improve quality of life for those with SCI.
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Ph. D.