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.
8 affiliations
- 1Center for Rheumatology and Spine Diseases, Copenhagen Center for Arthritis Research (COPECARE), Copenhagen University Hospital - Rigshospitalet, Valdemar Hansens Vej 13, Glostrup, 2600, Denmark. [email protected].
- 2Mental Health Center Glostrup, Centre for Applied Research in Mental Health Care (CARMEN), Copenhagen University Hospital - Amager and Hvidovre, Nordstjernevej 41, Glostrup, 2600, Denmark.
- 3Department of Clinical Medicine, University of Copenhagen, Blegdamsvej 3B, Copenhagen, 2200, Denmark.
- 4Center for Rheumatology and Spine Diseases, Copenhagen Center for Arthritis Research (COPECARE), Copenhagen University Hospital - Rigshospitalet, Valdemar Hansens Vej 13, Glostrup, 2600, Denmark.
- 5Department of Occupational Therapy and Physiotherapy, Copenhagen University Hospital - Rigshospitalet, Blegdamsvej 9, Copenhagen, 2100, Denmark.
- 6The Danish Rheumatology Registry, DANBIO, Copenhagen, Denmark.
- 7Bispebjerg and Frederiksberg Hospital, Center for Clinical Research and Prevention, Nordre Fasanvej 57, Frederiksberg, 2000, Denmark.
- 8Internal Medicine, Geriatric Section, Zealand University Hospital Koge, Koge, Denmark.
Abstract
Background
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.Method
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.Results
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.Conclusion
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.
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BibTeX
@article{abild2026shared,
title = {{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.}},
author = {Signe Marie Abild and Julie Midtgaard and Charlotte Werdal Hansen and Luise Holberg Lindgren and Katrine Storm Piper and Bente Glintborg and Tanja Thomsen and Mathilde Glud Christensen and Bente Appel Esbensen},
journal = {BMC rheumatology},
year = {2026},
month = jul,
doi = {10.1186/s41927-026-00675-3},
url = {https://europepmc.org/article/MED/42928356},
note = {CC BY-NC-ND},
}
RIS
TY - JOUR
TI - 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.
AU - Signe Marie Abild
AU - Julie Midtgaard
AU - Charlotte Werdal Hansen
AU - Luise Holberg Lindgren
AU - Katrine Storm Piper
AU - Bente Glintborg
AU - Tanja Thomsen
AU - Mathilde Glud Christensen
AU - Bente Appel Esbensen
PY - 2026
DA - 2026/07/28
JO - BMC rheumatology
DO - 10.1186/s41927-026-00675-3
UR - https://europepmc.org/article/MED/42928356
AB - Background 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.Method 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.Results 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.Conclusion 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.
SN - 2520-1026
ER -