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.
Background: People living with MS during COVID-19 are experiencing the disruptions of the pandemic and concerns that their health status may place them at greater risk for worse COVID-19 outcomes.Objective: This study sought to understand how people living with MS in the United States experienced distress and perceived their COVID-19-related risk during the first surge of the pandemic. Methods: This was a web-based, self-report survey of people with MS who were living in the United States during the early stage of COVID-19. Primary outcomes were depression, anxiety, and positive-affect and well-being. Participants (N = 491) also provided data on demographics, MS-related factors, COVID-19 factors, and psychological coping. Results: Psychological distress was associated with age, psychological coping strategies, and having had symptoms consistent with COVID-19, but not with MS disease-related variables and COVID-19 risk factors. Perception of COVID-19-related risk was associated with age, MS disease severity, COVID-19-related factors, and anxiety.
Conclusion:This study demonstrated that even during COVID-19, distress and risk perception are primarily driven by psychological factors, experiencing symptoms consistent with COVID-19 and age, with minimal contribution from individual differences in health status, providing an impetus for continued efforts to optimize psychological interventions for people living with MS.
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