Adapting to living with systemic autoimmune rheumatic diseases; a qualitative exploration of patient and clinician perspectives

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.