“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

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.

Keywords:

• SCI
• Covid-19
• Pandemic
• Lived experiences
• Thematic analysis

Acknowledgments

The authors would like to express their thanks to all of the participants for their involvement in this project. We certify that all applicable institutional and governmental regulations concerning the ethical use of human volunteers were followed during the course of this research.

Disclaimer statements

Contributions ER, JH, and KM were responsible for study design, oversight of data collection, and extracting the data. All authors were involved in analyzing data, interpreting results, and writing the manuscript.

Funding No financial assistance was received in support of the study.

Conflicts of interest The authors declare no conflicts of interest.

Notes

a Respondent identification number

b Level of injury

c Spinal cord disease