What Is Relatives' Role in Arthritis Management? A Qualitative Study of the Perceptions of Patient-Relative Dyads

Aurélie Untas, Christel Vioulac, Emilie Boujut, Caroline Delannoy, Didier Poivret, Anne-Christine Rat, Catherine Beauvais, Janine-Sophie Giraudet Le Quintrec, Aurélie Untas, Christel Vioulac, Emilie Boujut, Caroline Delannoy, Didier Poivret, Anne-Christine Rat, Catherine Beauvais, Janine-Sophie Giraudet Le Quintrec

Abstract

Purpose: 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; chronic arthritis; disease management; partner; patient education; quality of life.

Conflict of interest statement

Dr Christel Vioulac reports personal fees from AFLAR (Association Française de Lutte Antirhumatismale), during the conduct of the study. Prof. Dr. Anne-Christine Rat reports personal fees from Sanofi Genzyme, personal fees from Pfizer Lilly, non-financial support from Mylan, non-financial support from Janssen, non-financial support from Pfizer, outside the submitted work. Dr Catherine Beauvais reports grants from Fondation Roche, during the conduct of the study; personal fees from Abbvie, personal fees from MSD, personal fees from Roche, personal fees from UCB, personal fees from MYLAN, non-financial support from NORDIC, non-financial support from UCB, non-financial support from Roche, non-financial support from Lilly, non-financial support from MEDAC, outside the submitted work. The authors report no other conflicts of interest in this work.

© 2020 Untas et al.

Figures

Figure 1
Figure 1
The interview guide

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