Date Presented 03/22/24
Preventable secondary health conditions lead to further disability, decreased participation, and death for persons with SCI/D. This study explored facilitators and barriers of people with SCI/D to engage in self-management behaviors and programs.
Primary Author and Speaker: Bridget G. Kraus
Contributing Authors: Timothy Wolf
PURPOSE: Despite improvements in acute survivorship, there have been no significant improvements in life-expectancy for persons with spinal cord injury/disease (SCI/D) since the 1980s. This is largely due to the presence of secondary health conditions (SHC) such as mental health diagnoses, bowel and bladder dysfunction, respiratory issues, pressure ulcers, autonomic dysreflexia, and more. SHCs, which are often preventable, treatable, and well-documented, lead to further disability, decreased participation, and even death. Occupational therapy practitioners are uniquely positioned to help address chronic self-management (SM) skills for persons with SCI/D to improve health outcomes and quality of life to enhance function and participation. While gold-standard SM programs have evidenced success with other neurological populations, they have not been successful within the SCI/D population. This could be due to the unique considerations and experiences that persons with SCI/D face to manage their long term health.
OBJECTIVE: This study explored (1) facilitators and barriers to engaging in SM behaviors and programs for persons with SCI/D and (2) stakeholder perspectives on potential SM program components and content for intervention development.
DESIGN AND METHOD: 38 participants with SCI/D responded to this cross-sectional study and needs assessment via telehealth conducted at the University of Missouri-Columbia. Responses were analyzed to determine descriptive statistics.
RESULTS: Participants indicated barriers to SM include transportation/distance, presence of SHCs, lack of local resources, and lack of peers and experts within a reasonable distance. Participants noted that virtual SM programs with strong psychological health/coping components and peer and healthcare provider engagement were preferred.
CONCLUSION: 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.
References
National Spinal Cord Injury Statistical Center. (2020). Spinal Cord Injury: Facts and Figures at a Glance
Cao, Y., DiPiro, N., & Krause, J. S. (2019). Health factors and spinal cord injury: a prospective study of risk of cause-specific mortality. Spinal cord, 57(7), 594–602.
Munce, S. E., Webster, F., Fehlings, M. G., Straus, S. E., Jang, E., & Jaglal, S. B. (2014). Perceived facilitators and barriers to self-management in individuals with traumatic spinal cord injury: a qualitative descriptive study. BMC Neurology, 14(1), 48.
Robineau, S., Nicolas, B., Mathieu, L., Duruflé, A., Leblong, E., Fraudet, B., Gélis, A., & Gallien, P. (2019). Assessing the impact of a patient education programme on pressure ulcer prevention in patients with spinal cord injuries. Journal of Tissue Viability, 28(4), 167–172.
