Bouncing back again, and again: a qualitative study of resilience in people with multiple sclerosis

Arielle Michal Silverman · Aimee M. Verrall · Kevin N. Alschuler · Amanda Elizabeth Smith · Dawn M. Ehde

92 citations0/0 files storedDisability and Rehabilitation

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Resilience and Mental Health Multiple Sclerosis Research Studies Cancer survivorship and care

Abstract

Purpose The purpose of this study was to describe the meaning of resilience, factors facilitating resilience and barriers to resilience, from the perspective of persons with multiple sclerosis (MS), their care partners and community stakeholders. Method We conducted four focus groups: two with middle-aged (36-62 years) individuals with MS [one with men (n = 6) and one with women (n = 6)], one for partners of individuals with MS (n = 11) and one with community stakeholders serving people with MS (n = 9). We asked participants to describe what resilience means to them, what factors facilitate resilience and what barriers to resilience they perceive. We analyzed the focus group transcripts for emerging themes and sub-themes. Results Participants found it difficult to generate a concise definition of resilience, but they generated evocative descriptions of the concept. Psychological adaptation, social connection, life meaning, planning and physical wellness emerged as facilitators of resilience. Resilience depletion, negative thoughts and feelings, social limitations, social stigma and physical fatigue emerged as barriers to resilience. Conclusion The unpredictable nature of MS can present unique challenges to resilient adjustment, especially during middle age. However, several factors can contribute to resilience and quality of life, and these factors are amenable to intervention. Implications for Rehabilitation Resilience is the capacity to bounce back and thrive when faced with challenges. People with MS develop resilience through psychological adaptation, social connection, life meaning, planning ahead and physical wellness. Barriers to resilience with MS include burnout, negative thoughts and feelings, social difficulties, stigma and fatigue. Interventions should address both individual and social factors that support resilience, such as promoting positive thinking, planning and engagement in meaningful activities.

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1998Qualitative inquiry and research design: choosing among five traditions.1994Phenomenological research methods 2004Loss, Trauma, and Human Resilience: Have We Underestimated the Human Capacity to Thrive After Extremely Aversive Events?2000Self-regulation and depletion of limited resources: Does self-control resemble a muscle?1985Some guidelines for the phenomenological analysis of interview data 1999Interviewing for Social Scientists 1994Moustakas, Clark, Phenomenological Research Methods. Thousand Oaks, CA: Sage, 1994.1997Basic concepts for qualitative research

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2017Pilot evaluation of a resilience training program for people with multiple sclerosis.

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