ABSTRACT
Background: An earlier follow-up study from the CogEx rehabilitation trial showed little change in symptoms of depression, anxiety and psychological distress during the first COVID-19 lockdown compared to pre-pandemic measurements. Objective(s): Here we provide a second follow-up set of behavioral data on the CogEx sample. Method(s): Data were obtained from the CogEx study, a randomized controlled trial of exercise and cognitive rehabilitation in people with progressive MS involving 11 centres in North America and Europe. Participants completed the same COVID Impact Survey and self-report measures of depression, anxiety and MS symptoms that had been obtained during the first pandemic lockdown period. Result(s): The average time between measurements was 11.4 (SD=5.56) months. Sample size declined from 131 to 72 largely because pandemic restrictions prevented data collection from sites in Denmark and England. There were no significant differences in age, sex, EDSS, disease course and duration between those who participated in the current follow-up study (n=74) and the group that could not (n=57). One participant caught Covid in the time between assessments. Participants now took a more negative view of their mental/psychological wellbeing (p=.0001), physical wellbeing (p=.0009) and disease course (p=.005) compared to their last assessment. Depression scores increased on the HADS-depression scale (p = .01) and now exceeded the clinically significant threshold of >= 8.0 for the first time. Anxiety scores on the HADS remained unchanged. Poorer mental wellbeing was predicted by HADS depression scores (p=.012) and a secondary-progressive disease course (p=.0004). Conclusions and Relevance: A longer follow-up period revealed the later onset of clinically significant depressive symptoms on the HADS and a decline in self-perceptions of mental and physical wellbeing associated with the COVID-19 pandemic.
ABSTRACT
Background: Loneliness and social isolation are common in persons with spinal cord injuries (SCI) yet are poorly managed and/or treated. Objective(s): To understand social isolation and loneliness from the perspectives of individuals with SCI and to gather insight on the influence of the COVID-19 pandemic. Design(s): Descriptive qualitative design. Method(s): During a one-on-one telephone call, a brief survey was conducted to collect demographic and injury characteristics followed by in-depth semi-structured interview with nine individuals with SCI. Audio-recorded and transcribed verbatim transcripts were coded and analyzed using Braun and Clarke's (2006) six thematic analysis phases. Results Observed: The sample was mostly male (~80%), about half had a paraplegic injury and half a tetraplegic injury. Participants identified themes describing personal meanings of social isolation and loneliness and how it impacts life. Participants identified barriers preventing desired social interaction, and how having a SCI impacts the frequency and quality of their social interactions. Participants elucidated what constitutes a 'good' social connection. Finally, participants described the impact of the COVID-19 pandemic on their experiences of social isolation and loneliness. Conclusion(s): Individuals with SCI frequently experience social isolation and loneliness. Barriers to social interaction exist for people with SCI due to secondary conditions and challenges with participation. Individuals with SCI may be at increased risk for the many physical and mental health risks associated with loneliness and social isolation due to SCI-specific barriers. Findings suggest that efforts are needed to better identify and respond to social isolation and loneliness in community and healthcare settings. Support: This work was funded by the Department of Veterans Affairs, HSR&D, grant SWC 21-002, Understanding Social Isolation, Loneliness, and Treatment Preferences in Veterans with Spinal Cord Injuries and Disorders: A Qualitative Evaluation [PI: LaVela, SL]. The views expressed in this manuscript are those of the authors and do not necessarily reflect the position or policy of the Department of Veterans Affairs or the United States government.