Patients’ and their relatives’ experience of Chronic Inflammatory Arthrisis: a perspective for Therapeutic Patient Education

Abstract

Background: According to the WHO, Therapeutic Patient Education (TPE) should help both patients and their relatives. However, in rheumatology most programs are exclusively designed for patients and do not consider family. The aim of this study was to identify patients’ and their relatives' reactions and difficulties facing the disease, as well as it’s impact on their relationship, in order to get more insight on how to integrate family in TPE. Methods: 40 individual semi-structured interviews were conducted with 20 patients suffering from Chronic Inflammatory Arthrisis (13 Rheumatoid-Arthrisis; 7 Spondyloarthritis) and a relative in 7 French rheumatology departments. A thematic analysis following an inductive approach was conducted using the QDA-Miner Software (inter-coder agreement .7). Findings: Both patients and relatives expressed their emotional reactions caused by the disease (e.g. anger or distress), their thoughts (e.g. patients’ feelings of limitation or relatives’ helplessness), relatives’ attitude regarding the disease (e.g. adjustment and search for informations about the disease) and health issues. When they spoke about their relationship, difficulties emerged regarding communication about the disease as well as tensions or conflicts. Even though patients and relatives agreed on most of these topics, some subjects were mostly addressed by patients (e.g. their concerns or impression of being a burden) whereas others were by relatives (e.g. their inability to understand the patient’s reactions and difficulties). Discussion: These results highlight the difficulties patients and relatives are confronted to regarding their relationship facing IA and generate new ideas about how to include relatives in TPE to improve patients’ care.