Views of people with traumatic spinal cord injury about the components of self-management programs and program delivery: a Canadian pilot study

BACKGROUND: Given the increasing emphasis on the community management of spinal cord injury (SCI), strategies that could be developed and implemented in order to empower and engage individuals with SCI in promoting their health and minimizing the risk of health conditions are required. A self-management program could be one approach to address these complex needs, including secondary complications. Thus, the objective of this study was to determine the importance attributed to the components of a self-management program by individuals with traumatic SCI and explore their views/opinions about the delivery of such a program. METHODS: Individuals with SCI were recruited by email via the Rick Hansen Institute (Vancouver, British Columbia, Canada) as well as an outpatient hospital spinal clinic. Data were collected by self-report using an on-line survey. RESULTS: The final sample size was 99 individuals with traumatic SCI. The components of a self-management program that were rated as “very important” by the greatest proportion of participants included: exercise (n= 53; 53.5%), nutrition (n= 51; 51.5%), pain management (n= 44; 44.4%), information/education on aging with a SCI (n= 42; 42.4%), communicating with health care professionals (n= 40; 40.4%), problem solving (n= 40; 40.4%), transitioning from rehabilitation to the community (n= 40; 40.4%), and confidence (n= 40; 40.4%). Overall, 74.7% (n= 74) of the sample rated the overall importance of the development of a self-management program for individuals with traumatic SCI as “very important” or “important”. Almost 40% (n= 39) of the sample indicated that an internet-based self-management program would be the best delivery format. The highest proportion of participants indicated that the program should have individuals of a similar level of injury (n= 74; 74.7%); having individuals of a similar age (n= 40; 40.4%) was also noted. Over one-quarter of the sample (n= 24) had a depression score consistent with significant symptoms of depression. CONCLUSIONS: Future research is needed to further evaluate how the views of people with traumatic SCI change over time. Our findings could be used to develop and pilot test a self-management program for individuals with traumatic SCI. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (doi:10.1186/s12883-014-0209-9) contains supplementary material, which is available to authorized users.