An Integrative Exploration of Psychological Resilience in Informal Caregivers of Persons with Multiple Sclerosis

Abstract

Informal caregiving is growing in demand and is far from a uniform experience. Some caregivers report burdensome effects, while others attest to a wide range of benefits associated with their role. In the context of informal caregivers of persons affected by chronic neurological conditions (CNCs), psychological resilience is increasingly being explored as a protective factor that may account for variability in the caregiver experience; however, multiple sclerosis (MS) caregivers are noticeably absent from this body of work. To synthesize current evidence concerning resilience conceptualizations, assessments, and health correlates within this population, this thesis included a systematic review of resilience in CNC informal caregivers in which MS caregivers were unrepresented. Following this review, a qualitative study was conducted in informal MS caregivers to ascertain MS caregivers’ conceptualizations and unique lived experiences of resilience. Twenty-four semi-structured interviews of Canadian MS informal caregivers were conducted. Informed by the socioecological model of resilience in caring relationships, transcripts were analyzed using flexible thematic analysis. In support of the conceptual ambiguity of resilience, caregivers did not concur on a single resilience conceptualization. Emergent themes contributed to the creation of a cyclical model of resilience that incorporates adversity in the form of continuous loss and obstructed health-related self-care, individual and community resources, and multilevel adaptive pathways. We use our model to prompt future research directions and inform the development of effective resilience-enhancing interventions for MS caregivers.