Investigating Caregiver Needs and Support Gaps in Multiple Sclerosis: An Exploratory Qualitative Study
Federica Rotondi, Elena Pignattelli, Jessica Podda, Erica Grange, Pasquale Paletta, Michela PonzioBackground/Context
Advances in multiple sclerosis (MS) therapies have intensified reliance on informal caregivers; concomitantly, prevailing familistic welfare norms and fragmented service configurations further undermine caregivers’ ability to maintain self‐continuity and social recognition.
Objective
Within an exploratory qualitative design, to examine (1) how informal caregivers of people with MS articulate their psychological and relational needs within a familistic welfare context, and (2) which cultural and systemic barriers they identify as shaping the fulfilment of those needs.
Design
Exploratory qualitative, reflexive thematic analysis, informed by social phenomenology; data were collected in May 2025 (Protocol 432/2024–ID 14219).
Settings and Participants
One 90‐min focus group was conducted with ten informal caregivers (mean age: 57.1 years, SD: 12.4, range: 34–84).
Analytic Focus
Narratives concerning identity preservation, role negotiation, coping strategies and perceived social support.
Results
Analysis produced two interpretive themes that map one‐to‐one onto the research questions. First, caregivers experienced tension between maintaining a coherent sense of self and performing multiple socially imposed roles, resisting consolidation into a singular caregiver identity. Second, fragmented provision, intermittent respite and limited institutional recognition produced decisional isolation, chronic vigilance, and guilt about self‐care. Distress was attributed more to disruption of self‐continuity than to specific caregiving duties. Participants employed adaptive strategies, reflecting engagement and ethical deliberation, indicative of resilience shaped by systemic neglect.
Conclusions
Interventions should address caregivers’ need for identity continuity alongside systemic gaps through integrated psychological support, reliable respite and formal recognition of caregiving as moral and social labour.