Patient Preference and Adherence (Jan 2020)
What Is Relatives’ Role in Arthritis Management? A Qualitative Study of the Perceptions of Patient-Relative Dyads
Abstract
Aurélie Untas,1 Christel Vioulac,1 Emilie Boujut,1 Caroline Delannoy,2 Didier Poivret,3 Anne-Christine Rat,4,5 Catherine Beauvais,6 Janine-Sophie Giraudet Le Quintrec7 1Université de Paris, LPPS, Boulogne-Billancourt F-92100, France; 2Private Practice, Paris, France; 3Rheumatology Department, Hospital of Metz-Thionville, Metz, France; 4Université de Lorraine, Paris Descartes University, EA 4360 APEMAC, Nancy, France; 5Centre Hospitalier Universitaire Caen Normandie, Caen, France; 6Rheumatology Department, Saint Antoine Hospital, Assistance Publique Hôpitaux de Paris, Paris, France; 7Rheumatology Department, Cochin Hospital, Assistance Publique Hôpitaux de Paris, Paris, FranceCorrespondence: Aurélie UntasLaboratory of Psychopathology and Health Processes EA 4057, Université de Paris, 71 Avenue Edouard Vaillant, Boulogne-Billancourt 92100, FranceTel +33 176533050Email [email protected]: The main aim of patient education is to maintain or improve quality of life. It is mostly focused on patients even if families might be included. The aim of this study was to explore patients’ and relatives’ perceptions and experiences about the role of relatives in disease management in chronic inflammatory arthritis in order to provide insight into how patient education programs might include relatives.Methods: Individual semi-structured interviews were conducted with 20 patients (13 with polyarthritis; 7 with spondyloarthritis) and one of their relatives (N=40). A thematic analysis following an inductive approach was carried out using the QDA-Miner Software (inter-coder agreement 0.7).Results: The analysis revealed three relevant themes. The first was their perception of relatives’ general roles, which included technical skills, knowledge about the disease and interpersonal skills. The other two themes dealt with their specific relationship: the dyad relationship (including the usual relationship and in the context of the disease) and the help relationship (including practical assistance and emotional help).Conclusion: The results show the wide-ranging role of relatives in practical and emotional support, the complexity of patient-relative interactions regarding requests for help, their relationship and ability to share difficulties. This study gives indications about how to include relatives in TPE programs and emphasizes the importance of developing interventions for patient-relative dyads regarding the practical and emotional management of the disease, as well as interactions concerning help. Those interventions should enhance patients and relatives’ quality of life.Keywords: caregivers, patient education, disease management, chronic arthritis, quality of life, partner
