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. K E Y W O R D Scaregivers, inflammatory arthritis, relatives

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Background:Adjustment to inflammatory arthritis (IA) is complex for the patient but also for the relative and there is room for improvement in the support provided to the dyadObjectives:to explore patients and relatives experience of IA, their difficulties, mutual expectations, communication, coping strategies and needsMethods:Participants were recruited by 7 rheumatologists during their consultations. Eligibility criteria were: having a rheumatoid arthritis (RA) or a spondyloarthritis (SpA). Relatives were invited to participate by the patients. Face to face interviews with the dyad were conducted by 3 psychologists with an interview guide built by the project working group. A thematic analysis was conducted by 2 psychologists, following a general inductive approachResults:20 patients and their relative (18 partners, 1 mother, 1 friend) were included: 13 RA and 7 SpA, median disease and couple duration 10 (range 1–36) and 28 years (range 1.5–57). The analysis revealed 4 main themes: disease leaved together, impact of the disease on the relationship, social impact of the disease on the dyad, difficulties and needs of the relative. Disease leaved together: dyads explained the new roles of the relative: providing material help, understanding and emotional support, acting as a driving force, take part of medical care (medical decisions, support in adhesion, searching for information). Communication around the disease is an important theme; reasons to avoid talking about the disease were: not focusing on the disease, respecting the need to be alone, words are not always needed. For other dyads, talking about the disease allows for improving knowledge about the disease or for security reasons. Impact of the disease on the relationship: if they do not feel the IA has changed their relationship, they acknowledged some tensions because of the disease: disease get too much attention in their relationship, lack of communication create tensions. Social impact of the disease on the dyad: social isolation was highlighted: patients need sometimes to be alone, invisibility of the disease creates misunderstandings, people around don’t realize what it means to live with IA. Unpredictability of the symptoms makes it difficult to organize everyday life and to have projects. Difficulties and needs of the caregiver were rarely raised when the dyads were interviewed together: sometimes disease is not well accepted by the caregiver, not being able to help is frustrating, finding the right way to help is difficult. Knowledge of the disease and the patient symptoms are important needs expressed by the caregiverConclusions:The current qualitative study offers new insights into the perception of patient and relative of their shared life with the disease and is a first step to develop interventions to support them. This study has highlighted the importance of the recognition of the role of the relative in the disease management. Joint approach to treatment is a basis for coping with the disease. This supposes: 1) a good understanding of one ...