Perspectives on Health With Spinal Cord Injury Now and in the Future: A Qualitative Descriptive Study

Abstract

Abstract Objective Over the past half century, the landscape of life and aging with spinal cord injury (SCI) has changed drastically, in part due to medical advancements and the rapidly increasing aging population. With these changes comes a critical need for rehabilitation professionals to understand aging with SCI in relation to strategies that support health maintenance over time. The purpose of this study was to identify and describe the meaning of health maintenance and aging outlook from the perspectives of individuals living with SCI. Methods A qualitative descriptive approach using focus group interviews and thematic analysis was used to generate a rich understanding of shared experiences with SCI by allowing for discussion among participants. Results Participants were 24 individuals ranging in age from 22 to 76 years who were living with chronic SCI (>12 months), with injury duration ranging from 3 to 47 years. Health maintenance was connected to 3 themes: self-management routine to prevent secondary health conditions; importance of injury acceptance over time; and engagement with disability networks. Aging outlook was linked to fear of functional dependence and lack of evidence-based education on aging with SCI. Conclusion These findings suggest that individuals living with SCI would benefit from clinical support that acknowledges psychological and social aspects of health beyond physical routines. Impact These findings inform the development and implementation of SCI-related interventions to maximize healthy aging. It is crucial for clinicians and researchers to investigate issues beyond routine self-management and functional independence to support the emotional adjustment of life with SCI. Unique personal considerations based on life stage when injured warrant investigation. Education and advocacy for peer support is imperative at all life stages given its positive impact on health.