Exploring the ecology of care: qualitative findings from the Support Network Assessment of care Partners of individuals with multiple sclerosis (SNAP-MS).

Abstract

To identify supports used by multiple sclerosis (MS) care partners and characterize key dynamics influencing support acquisition and mobilization. Cross-sectional semi-structured interviews were conducted with 15 MS care partners living in Canada. Visual depictions of support networks were generated, and thematic analysis was used to identify major themes from interview transcripts. Care partners were mostly women (<i>n</i> = 13, 86.7%) with a mean age of 50.8 (SD = 11.8). Support was described as mediating cycles of resilience among care partners. Care partners reported key barriers to support use including a lack of resource visibility, inconsistent support access, and a fear of burdening natural support networks. Facilitators of support use included a desire to build redundancy in support networks, shared experiences with natural supports, and previous experiences needing support. Care partners recognized the importance of maintaining identities outside of their caregiving role and navigating the caregiving experience dyadically with their care recipient. Findings highlight the complexity of resource use dynamics among MS care partners. Support for care partners must be flexible to accommodate divergent needs and expectations for support. Future investigations are needed to further understand and recognize broader ecological dynamics affecting care partner support use.