Abstract
BackgroundThe 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.MethodsA 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.ResultsThe 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.ConclusionsInterventions 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.
Highlights
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
Design/approach The present study took a descriptive qualitative approach using telephone interviews. This approach was employed as there is a paucity of research on selfmanagement in individuals with traumatic SCI as well as their caregivers and the qualitative descriptive approach is well-accepted for researching topics about which little is known and yielding practical answers of relevance to policy makers and health care practitioners [15, 16]
Health care managers from adult acute care/trauma and rehabilitation centres were included in order to triangulate the findings from a health care professional and/or health system perspective
Summary
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. Families and others comprising the informal support network for these people have less time to adjust These reduced lengths of stay in rehabilitation, and ensuing consequences, lead to higher rates of secondary complications and subsequent high rehospitalization rates [3,4,5]. Given this increasing emphasis on the community management of SCI, strategies that could be implemented in order to increase patients’ involvement and control of their medical treatment and its subsequent effects are required [6]. In SCI in particular, poor self-management has been identified as a significant factor in the development of an inactive lifestyle, secondary conditions, and deconditioning [11, 12]
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