Background: Informal unpaid family caregivers (e.g., spouses, parents, siblings) are the primary providers of support to people living with multiple sclerosis (MS), and the experience of MS caregiving is seldom uniform. Some caregivers report burdensome effects of caregiving, while others report a wide range of benefits associated with their role (e.g., personal growth, positive change in goals, improved quality of relationships). This variability in experience and adaptation may be due to a protective factor, namely psychological resilience, which describes the process of maintaining positive adaptations or healthy functioning despite encounters with significant adversity. An increasing amount of research in family caregiving in chronic neurological conditions has begun to examine resilience and its complex mechanisms, but MS caregivers are noticeably absent from this body of work. This represents a significant knowledge limitation as the challenges inherent in providing care to a person with MS reflect the heterogenous and unpredictable nature of this early onset and progressive disease.
Objectives: To explore MS caregivers experiences of resilience by applying Windle and Bennetts (2011) ecological resilience framework to investigate key resilience resources and processes.
Methods: This study is part of a larger study that aimed to characterize the trajectory of resilience over a 3-year period among Canadian MS caregivers. Virtual semi-structured interviews (N=24) were conducted using Zoom videoconferencing software. Interviews were recorded, transcribed, and anonymized. Transcripts were analyzed using reflexive thematic analysis.
Results: The sample contained mainly (83%) cohabitating spousal caregivers. Over half (54%) of participants were female with a mean age of 57. Emergent themes constructed a cyclical model whereby resilience exists within a continuum, beginning with encounters with hardship and extending to thriving adjustment. Key themes 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: Although this sample appeared to be resilient, inadequate resources and a lack of programming at the community and societal levels were evident. These findings could provide researchers and decision-makers with relevant information for designing and implementing resilience-building interventions for MS caregivers that attend to contextual factors and current systemic support deficiencies.
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