“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 selfreported 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 openended 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 2 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.

The impact of the COVID-19 virus and pandemic on healthcare utilization, access, delivery, experiences, and outcomes in the spinal cord injuries/dysfunction population: A scoping review study

“…Eight studies were qualitative, with three using interviews [ 9 , 32 , 42 ], four using surveys with open-ended questions [ 17 , 31 , 34 , 46 ], and one using focus groups [ 41 ]. Fifteen studies were quantitative, with four that were retrospective using patient chart data or health administrative databases [ 2 , 30 , 33 , 36 , 37 ], eight using survey data [ 29 , 35 , 39 , 43 , 45 , 48 – 50 ], and three using patient data (prospective chart review/clinical data, intake questionnaire and video consults) [ 38 , 40 , 44 ].…”

“…Characteristics of participants of patient and individual level studies are reported in Table 2 . Of the 22 studies that used patients/individuals level SCI/D data, 11 studies investigated findings in both TSCI and NTSCD [ 2 , 17 , 31 – 34 , 40 , 41 , 44 , 48 , 49 ], and two studies only focused on TSCI [ 35 , 36 ]. However, nine studies did not specify if participants had a TSCI or NTSCD [ 9 , 29 , 30 , 38 , 39 , 42 , 43 , 45 , 46 ].…”

“…No studies investigated differences between sex or gender. Beyond age and sex/gender, twelve studies reported other sociodemographic factors, such as race/ethnicity [ 9 , 17 , 31 , 32 , 34 , 35 , 41 , 42 , 45 , 46 , 48 , 49 ]. However, only one study investigated if patient characteristics impacted healthcare utilization, access, and delivery or patient outcomes and experiences [ 33 ].…”

“…Of these studies, three focused on the outcomes of the COVID-19 infection in individuals with SCI/D [ 33 , 36 , 38 ], five focused on virtual care [ 2 , 29 – 31 , 40 ], two focused on the SCI/D healthcare communities response to the pandemic from the perspective of healthcare providers [ 47 , 50 ], and one study focused on providing in-patient care for acute spinal disorders during the pandemic [ 44 ]. An additional three studies had both health-related and non-health related objectives and findings [ 45 , 48 , 49 ]; whereas eight studies’ objectives focused on general perceptions, experiences, challenges, and impact the COVID-19 pandemic had on individuals with SCI/D, but their findings included healthcare-related topics [ 9 , 17 , 32 , 34 , 39 , 41 , 42 , 45 , 46 ]. Two studies had objectives focused on changes in mental health /quality of life status, but also had healthcare-related findings [ 35 , 43 ].…”

“…Sixteen studies had findings related to healthcare utilization and/or access [ 9 , 17 , 32 , 34 , 35 , 39 , 41 – 43 , 45 – 50 ]. However only one study’s main objective was healthcare-related [ 47 ].…”