Darren Nickel

Study Design: Interpretive descriptive qualitative study Objective: To explore experiences of social isolation and loneliness (SIL) amongst persons with mobility-limiting chronic conditions and how they may have changed with public health restrictions during the COVID-19 pandemic.​ Setting: Canada Methods: Participants completed a semi-structured interview virtually and an online questionnaire. Two researchers transcribed the interviews and conducted thematic analysis. Results: Six males and three females participated (M_age=54y), all of whom had a mobility-limiting chronic condition and reported using a wheelchair. Median UCLA Loneliness Scale score was 45 (IQR = 13). Participants reported experiencing loneliness at times of major life change including onset of disability. There was variability between participants in their reports of SIL during the pandemic (negative, no changes, and positive). Coping strategies reported for SIL included interacting with others via technology/support groups, gathering outdoors, participating in recreational activities, and moving closer to families/more accessible places. Conclusions: Although SIL are familiar experiences to persons with mobility-limiting conditions, we found considerable variability in reports of SIL during the COVID-19 pandemic. Further research should aim to identify individuals who are particularly vulnerable to prolonged SIL and how to reduce the negative health effects post-isolation.

Study design Qualitative. Objective To explore the perspectives of persons living with chronic (>5 y) traumatic spinal cord injuries (tSCI) concerning medical assistance in dying (MAID). Setting Saskatchewan, Canada. Methods Qualitative exploratory using an interpretative description methodology. Individual semi-structured interviews were held with online video conferencing. Interviews were analyzed using codebook thematic analysis. Results Ten persons with a chronic (>5 y) tSCI participated (seven males, three females; age 20s–50s; spinal cord level C2-T10). Participants expressed support for persons living with SCI having access to MAID, specifically in the context of preserving autonomy and respecting equality when compared with able-bodied individuals. However, some were concerned about the implications of access to MAID solely based on the diagnosis of a SCI. Participants also emphasized the variability in the initial personal response to injury and expressed concern about MAID being immediately available after injury. They explained the significance and necessity of reflecting on the injury in what can be a lengthy process of adjustment and acceptance. Participants also discussed the importance of hope and highlighted the irreplaceable value of peer support in shaping hope throughout rehabilitation and the need for compassionate, comprehensive, and continuous care to facilitate reintegration and support independence. Conclusions Access to MAID provides a greater range of choices for individuals with tSCI but could increase deaths occurring before optimal adaptation and adjustment. The involvement of inter-professional teams, mental health specialists and peers is important to frame hope and understand the potential of a fulfilling life with a tSCI.

There is a gap in research on how best to support exercise in moderate to severe MS. The objective of this study is to share perspectives of people living with MS and physiotherapists on their experiences in a randomized clinical trial of online physiotherapy vs. an active comparator. Semi-structured exit interviews were conducted with volunteer participants from the online and comparator arms of the trial, and focus groups were held with study physiotherapists. Transcripts were analyzed using reflexive thematic analysis. Perspectives from participants with MS yielded three themes: usability of their program, utility of their program, and motivation to participate. Visual and dexterity impairments limited the usability of the online program. Having an opportunity “to be pushed” was valued by participants in both trial arms. Motivation to exercise was variable, and participants desired periodic face-to-face contact with their physiotherapists. Perspectives from trial physiotherapists yielded similar and complementary findings concerning usability and utility. Participants with MS and physiotherapists found the online physiotherapy platform useful for supporting exercise, yet they identified some limitations. As the appeal of online platforms has increased since the pandemic, it will be important to consider the needs of people with moderate to severe MS. NCT03039400.

Purpose: People with multiple sclerosis (MS) rank walking among the most challenging aspects of their condition. A greater understanding of people’s perspectives concerning their walking may help to prioritize walking outcomes and strategies for optimizing walking. The purpose was to explore perceptions of walking in people with MS and to describe their reactions after observing themselves walk on video. Materials and methods: An interpretive thematic analysis study using face-to-face, semi-structured interviews was conducted with 14 people who self-identified a change in their walking due to MS. Participants were video-recorded walking and watched their video during the interview. Results: Four themes were identified: “awareness,” “acceptance,” “constant change,” and “increased effort.” People with MS develop awareness of how their walking performance looks and awareness of constantly-changing internal factors and external factors which impact their walking. Awareness of change in fatigue, temperature, terrain, and the use of aids in particular are perceived relevant to walking and to impact the effort required to walk. People with MS also describe differences in their acceptance of how others view their walking and the changes related to walking. An analogy with a marionette performing describes how people perceive walking as no longer automatic; instead walking requires the person to consciously pull the strings to walk. An increase in both the physical and cognitive effort is required to walk and an awareness and acceptance of a variety of changes in oneself and the lived world may help or hinder walking. People with MS are willing to watch themselves walk on video and are not surprised by what they observe. Conclusions: People with MS develop a learned self-awareness with variable levels of acceptance about their walking function and what it looks like. The perceptions on walking from persons with MS suggest that focusing on reducing the effort to walk and minimizing the constantly-changing variables may help to optimize walking.

Purpose: The study sought to assess and compare the prevalence of narrowing of the major extracranial veins in subjects with multiple sclerosis and controls, and to assess the sensitivity and specificity of magnetic resonance venography (MRV) for describing extracranial venous narrowing as it applies to the chronic cerebrospinal venous insufficiency theory, using catheter venography (CV) as the gold standard. Methods: The jugular and azygos veins were assessed with time-of-flight MRV in this assessor-blinded, case-control study of subjects with multiple sclerosis, their unaffected siblings, and unrelated controls. The veins were evaluated by diameter and area, and compared with CV. Collateral vessels were also analyzed for maximal diameter, as a potential indicator of compensatory flow. Results: A high prevalence of extracranial venous narrowing was demonstrated in all study groups, collectively up to 84% by diameter criteria and 90% by area, with no significant difference between the groups when assessed independently ( P = .34 and .63, respectively). There was high interobserver variability in the reporting of vessel narrowing (kappa = 0.32), and poor vessel per vessel correlation between narrowing on MRV and CV (kappa = 0.064). Collateral neck veins demonstrated no convincing difference in maximum size or correlation with jugular narrowing. Conclusion: There is a high prevalence of narrowing of the major extracranial veins on MRV in all 3 study groups, with no significant difference between them. These findings do not support the chronic cerebrospinal venous insufficiency theory. Although MRV has shown a high sensitivity for identifying venous narrowing, time-of-flight imaging demonstrates poor interobserver agreement and poor specificity when compared with the gold standard CV.

Empowerment is believed to be an essential element in self-management of disease and the promotion of self-efficacy, and can be defined as the ability of individuals to increase control over aspects of their lives. In contrast, powerlessness in individuals with chronic illness can occur when they perceive that they lack the capacity, authority or resources to affect an outcome. Individuals with spinal cord injuries (SCIs) are at risk for powerlessness and have the potential to become empowered, but these concepts have not been explored within their context. The purpose of this study was to explore how individuals with SCI enact the empowerment process using Lord's (1991) process of empowerment framework. This study used a secondary analysis of a data set obtained from a mixed methods study exploring access to health and social care for 23 persons with SCI in Saskatchewan, Canada. The primary study data were collected from September 2012 to January 2013. The secondary analysis of data utilised a deductive thematic analysis approach and findings were conceptualised and applied to a model that represents the shift in balance between powerlessness and empowerment in individuals with SCI.

Self-efficacy is an important predictor of health-related physical activity in multiple sclerosis (MS). While past experiences are believed to influence efficacy beliefs, the explanations individuals provide for these experiences also may be critical. Our objective was to test the hypothesis that perceived success or failure to accumulate 150 min of physical activity in the previous week would moderate the relationship between the attributional dimension of stability and self-efficacy to exercise in the future. Forty-two adults with MS participated in this cross-sectional descriptive study. Participants completed questions assessing physical activity, perceived outcome for meeting the recommended level of endurance activity, attributions for the outcome, and exercise self-efficacy. Results from hierarchical multiple regression revealed a significant main effect for perceived outcome predicting self-efficacy that was qualified by a significant interaction. The final model, which included perceived outcome, stability, and the interaction term, predicted 37% of the variance in exercise self-efficacy, F (3, 38) = 7.27, p = .001. Our findings suggest that the best prediction of self-efficacy in the MS population may include the interaction of specific attributional dimensions with success/failure at meeting the recommended physical activity dose. Attributions may be another target for interventions aimed at increasing the physical activity in MS.