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Understanding Resilience in Persons with Multiple Sclerosis
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- Author / Creator
- Turpin, Karen VL
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Background: Psychological resilience is a dynamic process of positive adaptation in the face of adversity or trauma. Multiple Sclerosis (MS), a chronic neurological disease, engenders adversity because of its progressive, uncertain and variable course. Resilience in persons with MS depends on the balance between their resources, such as a supportive social network, and their vulnerabilities, such as physical disability. Studies on resilience in those with MS demonstrate its association with better quality of life, social support and mental health. To better understand how resilience in those with MS might be strengthened it is important to identify factors associated with greater resilience and to understand how persons with MS experience resilience resources and vulnerabilities in their daily lives. Purpose: The aims of this body of work were to: 1) assess the degree of resilience amongst persons with MS and determine which sociodemographic, clinical and psychosocial factors are associated with greater resilience (study 1); 2) explore the factor structure and psychometric properties of a widely used measure of resilience, the Connor-Davidson Resilience Scale (CD-RISC), in persons with MS (study 2); and 3) explore how persons with MS describe their experiences of four components of resilience: adapting, coping, social support and wellness (study 3). Methods: Study 1 – Participants with MS completed a cross-sectional survey that included the CD-RISC and sociodemographic, clinical and psychosocial measures. The average resilience score was reported, and general linear models were built to determine the factors associated with greater resilience. Study 2 – Participants of Study 1 formed the study sample. Exploratory and confirmatory factor analyses were conducted on the CD-RISC, internal consistency was assessed using Cronbach’s alpha, and construct validity was assessed through correlations among the CD-RISC score and sub-scales emerging from the factor analysis and health-related quality of life (Health Utilities Index Mark 3 (HUI3): multi-attribute and emotion subscales) and psychological well-being (Psychological Well-Being Checklist (PWB) subscales). Study 3 – For this qualitative study twelve participants were recruited from Study 1. Semi-structured interviews were conducted about four components of resilience: adapting to MS, coping with MS, social support and wellness. The interview data were analyzed using a qualitative description approach. Results: Study 1 – There were 358 surveys completed and returned. The average score on the CD-RISC was 72.4/100 (standard deviation 14.7). Nine factors were associated with greater resilience: older age, greater use of acceptance and cognitive/palliative (learning/faith) coping strategies, greater hope (goal setting and goal planning/execution), and better psychological well-being (autonomy, environmental mastery, personal growth and self-acceptance). Study 2 – Five factors emerged from the factor analysis of the CD-RISC: positive acceptance of change, personal competence, secure in oneself and others, perseverance, and spiritual influences. Internal consistency was 0.93 with 95% Confidence Intervals (CI) of 0.92-0.94. The CD-RISC scores showed correlations of 0.39-0.67 with the HUI3 and PWB subscales, and factors 1-4 showed correlations of 0.27-0.69 with the HUI3 and PWB. Factor 5, spiritual influences, was not significantly correlated with any of the HUI3 or PWB sub-scales. Study 3 – Participants described adapting to MS as changing their self-expectations, living differently, navigating roles and responsibilities, and adjusting to continually changing abilities. Coping with MS was described as acceptance, perspective, knowledge seeking, denial (when first diagnosed with MS) and faith. Social support was described as leaning on others, community and seeking expertise, but often involved strained connections and needing to maintain a distance from others. Wellness was described as managing symptoms and finding a path. Conclusions: The CD-RISC is a reliable measure of resilience in MS. Some of the factors associated with greater resilience are potentially modifiable, such as coping strategies. Longitudinal studies are needed to determine the temporal associations between these factors and resilience. Participants’ mix of both positive and negative experiences in relation to adapting, coping, social support and wellness, highlights the importance of recognizing and acknowledging the difficulties or challenges that arise even in those aspects typically thought of as resources. This thesis work adds to our understanding of factors associated with resilience in MS, and how persons with MS describe their experiences of resilience. These findings can inform further research looking into the strengthening of resilience resources and lessening of resilience vulnerabilities, and the impact such changes may have on the health and well-being of persons with MS.
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- Graduation date
- Spring 2020
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- Type of Item
- Thesis
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- Degree
- Doctor of Philosophy
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- License
- Permission is hereby granted to the University of Alberta Libraries to reproduce single copies of this thesis and to lend or sell such copies for private, scholarly or scientific research purposes only. Where the thesis is converted to, or otherwise made available in digital form, the University of Alberta will advise potential users of the thesis of these terms. The author reserves all other publication and other rights in association with the copyright in the thesis and, except as herein before provided, neither the thesis nor any substantial portion thereof may be printed or otherwise reproduced in any material form whatsoever without the author's prior written permission.