Patients and relatives coping with inflammatory arthritis: Care teamwork. (27th November 2019)

• Record Type: Journal Article
• Authors: Brignon, Morgane; Vioulac, Christel; Boujut, Emilie; Delannoy, Caroline; Beauvais, Catherine; Kivits, Joelle; Poivret, Didier; Giraudet Le Quintrec, Janine‐Sophie; Untas, Aurélie; Rat, Anne‐Christine
• Is Part Of: Health expectations. Volume 23:Number 1(2020)
• Page Start: 137
• Page End: 147
• Publication Date: 2019-11-27
• Subjects: caregivers -- inflammatory arthritis -- relatives; Medical policy -- Periodicals; Public health -- Periodicals; Health planning -- Periodicals; 362.105
• DOI: 10.1111/hex.12982
• Languages: English
• ISSNs: 1369-6513

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.