Meaning of self-management from the perspective of individuals with traumatic spinal cord injury, their caregivers, and acute care and rehabilitation managers: an opportunity for improved care delivery

BACKGROUND: The trend of decreasing length of stay in rehabilitation facilities has led to individuals with spinal cord injury (SCI) entering the community with unmet needs and fewer self-care skills to prevent secondary complications. The implementation of a self-management program for individuals with SCI for the management of these complex needs, including secondary complications, may be one option to fill these care gaps. A greater understanding of the meaning of self-management may facilitate the development of a tailored self-management program in this population. Thus, the current research aims to understand the meaning of self-management in traumatic SCI from the perspectives of individuals with traumatic SCI and their caregivers as well as acute care/trauma and rehabilitation managers. METHODS: A descriptive qualitative approach was used. Semi-structured telephone interviews were conducted with 26 individuals with traumatic SCI, their family members/caregivers, and managers from acute care/trauma and rehabilitation centres. Inductive thematic analysis was applied. RESULTS: The meaning of self-management in SCI related to two overarching themes of internal and external responsibility attribution and revealed differences between the meaning of self-management in SCI among individuals with traumatic SCI and their caregivers versus managers. Overall, the meaning of self-management among the SCI and caregiver participants related principally to internal responsibility attribution. For the manager participants, the meaning of self-management was much narrower and the overarching theme of internal responsibility attribution that was observed among the SCI-caregiver dyads was not as widely expressed by this group. CONCLUSIONS: Interventions that are co-created by users and health care professionals are associated with positive physical and mental health outcomes. Thus, the understanding of self-management from these varying perspectives could be applied to the development of a tailored self-management program that is relevant to individuals with traumatic SCI and their caregivers. This may involve the development of a program that uses some of the structure of traditional chronic disease self-management programs, in accordance with the beliefs held by the managers, but also incorporates elements of wellness/health promotion interventions, in accordance with the beliefs held by the SCI and caregiver participants.