Exploring the COVID-19 pandemic related experiences of individuals with a spinal cord injury

Background: Individuals who have sustained a spinal cord injury have gone through a life changing experience. The current COVID-19 pandemic now introduces additional changes. Objectives: 1) To explore COVID-19 related lived-experiences of community dwelling individuals with a spinal cord injury at the beginning of the pandemic. 2) To identify what, if any, ongoing impact the COVID-19 pandemic has on the functioning and health of community dwelling individuals with a spinal cord injury over the first six months of the pandemic. Methods: We used a convergent parallel mixed-methods longitudinal design. In study 1, we conducted semi-structured interviews to explore participants’ experiences at a single time point. In study 2, participants completed standardized measures at three time points, assessing mental health, resilience, boredom, social support, technology use, life space, and participation. We analysed the qualitative data according to a phenomenological method (Groenewald, 2004). Repeated measures ANOVAs were used to identify longitudinal quantitative changes. Results: We collected data from 22 participants (Age: 5311, Female: n=9) for study 1 and 21 participants (Age: 5411, Female: n=9) for study 2. In study 1, we identified three themes. “Experiencing changes to mobility and daily life” described the changes to normal routines and the health care system. “Struggling with new challenges” explored frustrations, sources of anxiety, and the lack of social interaction. “Being resilient in the face of a new normal” identified strategies for coping and managing information. In study 2, we found a large effect size for participation (2=0.20), which increased over time. We found medium effect sizes for anxiety (2=0.12), that decreased over time, and for social network usage (2=0.12), that fluctuated slightly but with an increased from time point one. Conclusions: The complex management of spinal cord injuries is compounded by the impact of COVID-19 related restrictions. Our results highlight potential issues with systemic bias and indicate a need for greater dialogue with the spinal cord injury community and increased accessibility. Future research should focus on finding efficacious ways of reducing the compounding impact that the COVID-19 pandemic has and on striving towards greater equity regarding factors such as employment and secondary health conditions.Medicine, Faculty ofGraduat