Changes in essential care in individuals with spinal cord injury during the COVID-19 pandemic.

STUDY DESIGN: Cross-sectional, observational study. OBJECTIVES: To determine whether changes in essential care during the COVID-19 pandemic impacted satisfaction with activities, participation, and relationships among individuals with spinal cord injury (SCI). SETTING: Data were collected online between December 31, 2020 and February 14, 2021 among community dwelling adults with SCI (N = 123). METHODS: The primary outcome variables were satisfaction with the ability to complete activities of daily living (ADLs) (mobility, dressing, feeding, and toileting), as well as satisfaction with participation in household and recreational activities, and satisfaction with relationships among friends, family, and with the status of one's relationship measured with the International Spinal Cord Injury Data Sets Activities and Participation Basic Data Set. Primary predictors were age, gender, time since injury, completeness of injury, injury level, access to mental health, access to medications, access to medical supplies, and access to personal care assistants (PCAs). RESULTS: Impact on access to mental health and impact on access to supplies were the most common factors affecting satisfaction with activities, participation, and relationships for individuals with SCI during the COVID-19 pandemic. Impact on access to PCAs/homecare was also found to impact certain outcomes including feeding and participation in household activities. CONCLUSIONS: Future supply chain disruptions from pandemics or natural disasters could have wide-reaching effects for individuals with SCIs. Thus, further research and advocacy is needed to improve mental health care planning and supply chain access during subsequent natural disasters.

Going Remote: A Revised Study Protocol for a Pilot Randomized Controlled Trial for Biofeedback Treatment of Anxiety Associated With Chronic Spinal Cord Injury.

Background: The incidence of anxiety in adults with spinal cord injury/disorder (SCI/D) exceeds that of the general population. Heart rate variability (HRV) biofeedback training is a potential treatment associated with a reduction in stress and anxiety, however HRV training has not been explored in the SCI/D population. Objectives: To describe a modified protocol piloting HRV training to reduce anxiety associated with SCI/D and detail the COVID-19-related modifications. Methods: To test the feasibility of the biofeedback treatment, 30 adults with SCI/D will complete this pilot randomized controlled trial. Enrollment started in January 2020, halted in March 2020 due to the COVID-19 pandemic, and resumed in March 2021 with a modified protocol. Protocol modifications are documented using the Framework for Reporting Adaptations and Modifications (FRAME). Participants are allocated to the treatment or control arm and undergo eight sessions of physiological monitoring at home using a commercially available HRV sensor and mobile application, which also delivers biofeedback training for those in the treatment arm. Surveys are administered following each session to capture self-reported stress, anxiety, and mood. The study is approved by the HCA-HealthONE institutional review board and is registered with clinicaltrials.gov (NCT# 03975075). Conclusion: COVID-19 has changed the research landscape, forcing scientists to rethink their study designs to address patient and staff safety in this new context. Our modified protocol accomplished this by moving the treatment setting and delivery out of the clinic and into the home. In doing so, we address patient and staff safety, increase external validity, and reduce participant burden.

A Study Protocol for a Multisite Randomized Controlled Trial of an Intervention to Improve Outcomes After Spinal Cord Injury.

Background: The consequences of spinal cord injury (SCI) can place significant demands on an individual's coping mechanisms. Interventions to promote psychological adjustment and coping are often included in inpatient rehabilitation programs; however, following discharge, many individuals with SCI do not receive ongoing counseling or education about psychological adjustment to disability. Effective postacute treatment models are needed to help individuals with SCI build skills that help them adapt to the stresses associated with a chronic physical disability, alleviate the consequences of anxiety and depression, and enhance subjective well-being. Objectives: To describe the protocol for a randomized clinical trial (RCT) of a 6-week intervention designed to improve psychosocial outcomes after SCI. Methods: To test efficacy and replicability of the intervention, we designed a three-arm, multisite RCT with assessments conducted at six time points. Our primary hypothesis is that participants in the Group arm will report greater improvements in psychosocial outcomes than participants who complete the intervention individually via video (Individual arm) or those who do not receive the intervention (Control arm). We also hypothesize that participants in the Group arm will maintain greater improvements in psychosocial outcomes longer than those in the individual or control arms. Conclusion: Results of the RCT will be presented and published to professionals and consumers, and intervention training and materials will be made available upon request.

"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.

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.

Resilience and mental health in individuals with spinal cord injury during the COVID-19 pandemic.

STUDY DESIGN: Cross-sectional, observational study. OBJECTIVES: To understand how resilience, access to personal care attendants (PCAs) and medical supplies, and concerns about medical rationing, finances, and social isolation are related to overall and mental health in individuals with spinal cord injury (SCI) in the context of the COVID-19 pandemic. SETTING: Community dwelling adults (N = 187) with SCI. METHODS: Data were collected online between May 1, 2020 and August 31, 2020. Outcomes were overall and mental health, depression and anxiety symptoms, and quality of life (QoL). Predictors were resilience, access to PCAs and medical supplies, and concerns about medical rationing, finances, and social isolation. RESULTS: Incomplete injury, concern about medical rationing, medical supply disruption, and social isolation predicted a greater perceived impact of the pandemic on overall heath. Younger age, decreased resilience, and concern about medical rationing and social isolation predicted greater perceived impact of the pandemic on mental health. Decreased resilience and concern about medical rationing and finances predicted increased anxiety symptoms. Incomplete injury, believing that medical rationing was occurring, decreased resilience, and concern about finances and social isolation predicted increased depressive symptoms. Decreased resilience and concern about finances, medical rationing, and social isolation predicted lower QoL. CONCLUSIONS: The negative effects of the pandemic on the overall and mental health of individuals with SCI may be ameliorated by resilience. In future crises, it may be beneficial to screen individuals for resilience so that those with decreased resilience are offered the appropriate resources to enhance resilience and improve overall wellbeing.