Perceptions of issues associated with the maintenance and improvement of long-term health in people with SCI

Study design: Qualitative design using focus groups. Objective: To explore the perceptions of people with SCI and their caregivers about information needs and service delivery options that may assist them to maintain or improve their long-term health. Setting: Province wide project in Alberta, Canada. Methods: Eight focus groups were conducted; five with community dwelling people with SCI and three with unpaid caregivers (family and friends). Content analysis was used to identify categories and themes arising from the data. Results: The findings from the study are broader than the original objective to explore information needs and service delivery options to promote long-term health. The participants more globally discussed factors that contribute to or provide barriers to their long-term health. Those factors are captured in five categories, including readiness, information pathways, community health care, health promotion, and contextual factors. A framework that illustrates the relationships between categories was constructed. Conclusion: The framework identifies areas to target in programmes designed to reduce or prevent secondary conditions in people with SCI.