"It's been a double-edged sword": an online qualitative exploration of the impact of COVID-19 on individuals with spinal cord injury in the US with comparisons to previous UK findings

Rohn, Edward J, Hearn, Jasmine H ORCID: https://orcid.org/0000-0001-5988-5278, Philippus, Angela M and Monden, Kimberley R (2024) "It's been a double-edged sword": an online qualitative exploration of the impact of COVID-19 on individuals with spinal cord injury in the US with comparisons to previous UK findings. Journal of Spinal Cord Medicine, 47 (1). pp. 51-63. ISSN 1079-0268

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Abstract

Objective: The impact of COVID-19 lockdowns and social distancing for persons with spinal cord injury (SCI) are poorly understood. This exploratory online qualitative study collected self-reported COVID-19 experiences from persons with SCI in the United States (US). To enrich understanding, these data were compared to similar previously-published data from a sample of SCI participants from the United Kingdom (UK). Design: Explorative, online qualitative study. Participants completed an online survey of open-ended qualitative questions pertaining to their experiences during the pandemic. Thematic analysis was utilized to generate themes from the US data. These themes were compared to our previously-published thematic analysis of data from the UK. Setting: Community-based sample of persons with SCI in the US. Participants; Participants were recruited via SCI-focused research registries and social media outlets serving the SCI community, using convenience sampling (n = 36). Key themes identified in the US data were compared to themes identified in a similar sample from the UK (n = 42) collected at the same time and published previously. Results: Analysis resulted in three themes from the US data, each containing positive and negative qualitative reflections. Themes included (1) health and access to care, (2) making sense of the pandemic, and (3) daily life during the pandemic. Each theme captured common facets of life during the pandemic, often shared by those without physical disabilities, but included accounts particularly relevant to persons with disabilities. Comparisons to thematic findings from the UK study revealed similarities (e.g. healthcare access challenges, isolation) and differences (e.g. importance of previous SCI experiences). Conclusion: We detailed common experiences of COVID-19 pandemic lockdowns and their impact on people with SCI, while contrasting these with sense-making positive reflections and social benefits that appeared to be helpful in managing distress and coping with the pandemic.