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.
ABSTRACT
OBJECTIVE: Evaluate the test-retest reliability of measures that comprise the Traumatic Brain Injury Model Systems follow-up data set. PARTICIPANTS: A total of 224 persons with a moderate-severe traumatic brain injury (TBI) enrolled in the Traumatic Brain Injury Model Systems National Database. DESIGN: Following standard administration of the follow-up interview, a second interview was administered 14 to 28 days later using the same interviewer and the same mode of administration. MAIN MEASURES: Traumatic Brain Injury Model Systems follow-up interview that includes 66 variables comprised (a) single item measures of demographics; employment; general health as well as specific health conditions; rehospitalization; tobacco, alcohol, and other drug use; transportation; and mental health and (b) multi-item instruments: FIM; Participation Assessment With Recombined Tools-Objective; Disability Rating Scale; Glasgow Outcome Scale-Extended; Supervision Rating Scale; Satisfaction With Life Scale; TBI Quality of Life Anxiety and Depression items; and The Ohio State University TBI Identification Method. RESULTS: Intraclass correlation coefficient values ranged from 0.65 to 0.99, weighted kappa values ranged from 0.54 to 0.99, and kappa values ranged from 0.43 to 1.00. Four kappa/weighted kappa estimates fell below 0.60: arrested, psychiatric hospitalization, number of days not in good physical health, and rating of general emotional health. CONCLUSIONS: With few exceptions, good to excellent test-retest reliability estimates were obtained. The findings support the use of these measures in prior and future studies and indicate that persons with moderate-severe TBI can provide reliable self-report.