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Patients and relatives coping with inflammatory arthritis: Care teamwork

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  • معلومة اضافية
    • Contributors:
      Maladies chroniques, santé perçue, et processus d'adaptation (APEMAC); Université de Lorraine (UL); Université Sorbonne Paris Cité (USPC); Laboratoire de Psychopathologie et Processus de Santé (LPPS (URP_4057)); Université de Paris (UP); Hôpital Foch Suresnes; Service de rhumatologie CHU Saint-Antoine; CHU Saint-Antoine AP-HP; Assistance publique - Hôpitaux de Paris (AP-HP) (AP-HP)-Sorbonne Université (SU)-Assistance publique - Hôpitaux de Paris (AP-HP) (AP-HP)-Sorbonne Université (SU); Centre hospitalier régional Metz-Thionville (CHR Metz-Thionville); Hôpital Cochin AP-HP; Assistance publique - Hôpitaux de Paris (AP-HP) (AP-HP); Centre Hospitalier Régional Universitaire de Nancy (CHRU Nancy)
    • بيانات النشر:
      HAL CCSD
      Wiley
    • الموضوع:
      2019
    • Collection:
      Archive ouverte HAL (Hyper Article en Ligne, CCSD - Centre pour la Communication Scientifique Directe)
    • نبذة مختصرة :
      International audience ; 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.
    • Relation:
      info:eu-repo/semantics/altIdentifier/pmid/31774612; hal-02406790; https://hal.sorbonne-universite.fr/hal-02406790; https://hal.sorbonne-universite.fr/hal-02406790/document; https://hal.sorbonne-universite.fr/hal-02406790/file/hex.12982.pdf; PUBMED: 31774612; PUBMEDCENTRAL: PMC6978873
    • الرقم المعرف:
      10.1111/hex.12982
    • Rights:
      info:eu-repo/semantics/OpenAccess
    • الرقم المعرف:
      edsbas.9EE1552A