Patients and relatives coping with inflammatory arthritis: Care teamwork

Abstract

Abstract Objective To explore how patients and relatives experience and talk together about their life with inflammatory arthritis. Design Qualitative research. Setting A convenience sample was used. Participants were recruited in seven rheumatology departments in France. Participants Patients with rheumatoid arthritis or spondyloarthritis, agreeing to participate in the study with a relative, age at least 18 years. Data collection and analysis Two psychologists conducted face‐to‐face interviews with 20 patient‐relative dyads (40 individuals). A thematic analysis followed a general inductive approach. Results Saturation was reached after interviews with 20 dyads. The analysis revealed four main themes: (a) disease ‘lived’ together: a new role for the relative (providing help in physical tasks, emotional support, acting as a driving force, having a role in medical care) and communication around the disease (not focusing on the disease); (b) impact of the disease on the relationship; (c) social impact of the disease on the dyad (social isolation); (d) difficulties and needs of the relative (need to better know the disease). Conclusion This study has highlighted the importance of recognizing the role of the relative in the management of inflammatory arthritis disease, especially when medical decisions are shared with professionals. A joint approach to treatment is a basis for coping with the disease. This approach supposes (a) discussions about relatives’ new roles to clarify them, (b) patients’ and relatives’ communication skills and (c) a good understanding of each other, which can be improved by providing information on the disease and coping strategies for both the patient and the relative.

Keywords

• caregivers
• inflammatory arthritis
• relatives