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ToolsTunks, Alice, Piper, Martha, Humfrey, Sean, Dalby, Ellie, Calderwood, Lucy, Naidu, Kaira, Taylor, Sydnae, Li, Rosia Xiaoke, Ahmed, Shihab, Diment, Wendy, Bosley, Michael, Van Emmenis, Miranda, Naughton, Felix, Norton, Sam, Cousins, Mandy, D’Cruz, David and Sloan, Melanie (2025) Adapting to living with systemic autoimmune rheumatic diseases; a qualitative exploration of patient and clinician perspectives. Rheumatology International, 46 (1). ISSN 0172-8172
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Abstract
Systemic autoimmune rheumatic diseases (SARDs) have widespread symptoms and negatively impact lives in multiple domains. This study explores self-management and coping strategies, and patient and clinician perspectives on adapting to living with a SARD. Semi-structured, in-depth interviews were conducted with patients and clinicians. Patients with SARDs (n = 31) were asked about how they adapted to, and whether they had accepted living with a SARD. Clinicians (n = 28) were asked about their experiences of patients adapting to living with a SARD and their involvement in this process. Data were analysed using reflexive thematic analysis within a critical realist framework by a multidisciplinary team including patients as equal members of the research team. Three themes were identified. The first theme identified adapting as a non-linear, ever-shifting journey. For many, this involved grief for their pre-disease identity and life, which for some resolved into acceptance and finding contentment. The second theme explored with patients and clinicians the various methods of identifying and implementing adaptations, and how adaptations often came with social and financial costs. The final theme considered the benefits of holistic and psychological support, and the limited current provision by healthcare services. Clinicians were largely very empathetic and cited lack of time and training as reasons for difficulty in addressing adaptation. Adapting to living with a SARD is highly individualised. To adapt, it is crucial to find tailored adaptations and come to terms with the unpredictable, non-linear aspects of SARDs and subsequently acceptance. As such, finding support integrating psychological support into rheumatology care. Future research should provide evidence for tailored therapeutic interventions for SARD populations.
| Item Type: | Article |
|---|---|
| Additional Information: | Data availability: Anonymised data may be available on reasonable request to the corresponding author. |
| Uncontrolled Keywords: | adapt,cope,qualitative,systemic autoimmune rheumatic disease,rheumatology,immunology and allergy,immunology ,/dk/atira/pure/subjectarea/asjc/2700/2745 |
| Faculty \ School: | Faculty of Medicine and Health Sciences > Norwich Medical School Faculty of Medicine and Health Sciences > School of Health Sciences |
| UEA Research Groups: | Faculty of Medicine and Health Sciences > Research Centres > Norwich Institute for Healthy Aging Faculty of Medicine and Health Sciences > Research Centres > Public Health |
| Related URLs: | |
| Depositing User: | LivePure Connector |
| Date Deposited: | 04 Aug 2026 14:16 |
| Last Modified: | 11 Aug 2026 13:18 |
| URI: | https://ueaeprints.uea.ac.uk/id/eprint/103975 |
| DOI: | 10.1007/s00296-025-06033-9 |
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