A continuum of languishing to flourishing: exploring experiences of psychological resilience in multiple sclerosis family caregivers

Abstract

Purpose Resilience research in family caregiving in chronic neurological conditions is growing, but multiple sclerosis (MS) caregivers are noticeably absent from this body of work. MS caregivers represent a unique population due to the disease’s early onset, prolonged life expectancy, and heterogeneity. As such, this study aimed to explore MS caregivers’ conceptualizations of resilience, examine MS caregivers’ experiences of resilience development, and determine which assets and resources influence resilience in this role. Methods Twenty-four Canadian MS caregivers were recruited. Semi-structured in-depth interviews were conducted with questions derived from an ecological resilience framework. Data were analysed using reflexive thematic analysis. Results Themes constructed a cyclical resilience model, beginning with encounters with hardship and extending to thriving adjustment. Subthemes included reports of additive challenges, impactful individual and community resources, and multi-level adaptive pathways. Within this cycle, the achievement of healthy adjustment exerted a positive feedback function and informed future responses to lifelong challenges. Conclusions Despite the salience of resilience processes within caregiver testimonies, inadequate resources at societal levels were evident. These findings afford researchers and decision-makers relevant information for designing and implementing resilience-building interventions for MS caregivers that attend to contextual factors and current systemic support deficiencies.

Development and psychometric properties of a self-assessed knowledge questionnaire for caregivers of people with multiple sclerosis (CareKoMS): a cross-sectional study

“…However, as time passes, ageing of both patient and caregiver, and the possible onset of comorbidities, add to the complexity of the disease management and to the care burden 6. A large body of literature shows that MS caregivers are at risk of experiencing considerable ‘burdens’ 7 8. Caregiver burden is not directly related to disease duration, but appears to be associated with the extent of disease progression, MS course, disability level, psychological distress and cognitive disturbances of the care recipient 9.…”