The shared burden of frailty in rheumatoid arthritis – a qualitative study of informal caregiving roles and support needs from the perspectives of patients and their informal caregivers

Frailty is increasingly recognized among older patients with rheumatoid arthritis (RA) and is associated with functional decline and growing dependence on others. As frailty progresses, significant others often assume extensive practical, emotional, and coordinative responsibilities, becoming informal caregivers. Given that RA is commonly managed across healthcare sectors, these responsibilities may also involve navigating and coordinating care across settings. Yet, their experiences and support needs remain underexplored in rheumatology care. This study aimed to explore how frailty in older patients with RA affects their informal caregivers, including the support they provide and their perceived needs, as understood by both older patients and informal caregivers themselves. Individual, semi-structured interviews were conducted with 17 older patients with RA and frailty (11 women, mean age 74) and thirteen informal caregivers (5 women, mean age 69). Older adults were recruited from four rheumatology outpatient clinics affiliated with Copenhagen University Hospital, Denmark. Data were analyzed using reflexive thematic analysis. Three interrelated themes were developed: (1) Gradual consolidation of caregiving in everyday life , (2) Emotional landscape of caregiving , and (3) Persistently navigating the healthcare system . Caregiving was identified as a progressively expanding role that reshaped daily routines, introduced emotional strain, and required navigation of fragmented healthcare services. Both patients and informal caregivers highlighted a need for clearer information about RA symptoms and disease trajectories, as well as care pathways and available support services, alongside improved coordination in the healthcare system and greater recognition of the roles of informal caregivers. The findings suggest that frailty in RA affects not only patients but also those closest to them. Recognizing informal caregivers as key partners in care and strengthening communication between health professionals across healthcare sectors may help mitigate caregiver burden.