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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.
Assuntos
Adaptação Psicológica , Artrite Reumatoide/psicologia , Gerenciamento Clínico , Família/psicologia , Pacientes/psicologia , Atividades Cotidianas , Feminino , França , Humanos , Entrevistas como Assunto , Masculino , Pessoa de Meia-Idade , Relações Profissional-Família , Apoio SocialRESUMO
OBJECTIVES: To guide Therapeutic Patient Education (TPE) programs to improve patients' and spouses' perceived health, we aimed to analyze the effect of the spouse health state and patient-spouse relationship on functional impairment, mental health and self-efficacy of patients with RA or SpA. METHODS: In this observational cross-sectional study, inclusion criteria were age≥18years and diagnosis of RA or SpA. The outcome criteria were functional impairment and mental health measured by the Medical Outcomes Study Short-Form 12-item version (SF-12-MCS); mental health measured by the General Health Questionnaire (GHQ-12); and self-efficacy by the General Self-Efficacy Scale (GSE Scale). Caregiver-patient relationship was assessed by the Personal Assessment of Intimacy in Relationships (PAIR) questionnaire and the Dyadic Adjustment Scale (DAS); social support by the Social Support Questionnaire-6 and spousal burden by the Zarit questionnaire. RESULTS: A total of 88 patient-spouse couples were included. Patients were mostly female (n=68, 77%), with mean age 59 (SD 12.6) years; 69% had RA. On bivariate analyses, only spousal burden was associated with patients' functional impairment. Patients' mental health was associated with satisfaction with social support and the dyad relationship. Self-efficacy of patients was associated with spousal burden, satisfaction with social support, spousal anxiety/depression and the dyad relationship. On multivariate analysis, improved mental health and perceived self-efficacy of patients were associated with spousal satisfaction with social support (Beta=0.8, P=0.1 with GHQ-12) good communication in the couple (Beta=0.5, P=0.04 with SF-12-MCS and Beta=0.4, P=0.04 with GSE Scale) and low spousal-assessed burden (Beta=-0.2, P=0.003 with GSE Scale). CONCLUSION: This study has identified potential focus for intervention. It has highlighted the importance of recognizing the role of couple communication (experiencing an open and fluent exchange of ideas) in the patient's mental health and self-efficacy but also perceived satisfaction with social support of both members of the couple on the patient's mental health.
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Artrite , Cônjuges , Adaptação Psicológica , Idoso , Comunicação , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Apoio SocialRESUMO
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.
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Few studies have clarified the use of complementary therapies (CTs) in France. The main objective of this preliminary study was to evaluate knowledge of CTs in 4 representative groups of patients: patients suffering from cancer, patients presenting with a chronic noncancerous disease, chronic dialysis patients and nonchronic or cancerous patients needing surgery.A formalized questionnaire was designed by 2 psychologists, an oncologist and an anesthesiologist in charge of the Pain Clinic and Support Care Unit. One-hundred eleven patients were enrolled, and all agreed to complete the questionnaire.Eighty (72%) patients did not know the term "complementary therapies" (patients who were "not aware of CTs"), and 24 (21.6%) patients knew the term "complementary therapies" (patients who were "aware of CTs"), while 7 patients were not sure of the meaning. There were no differences between aware and unaware patients in gender (Pâ=â.27), age (Pâ=â.24), level of education (pâ=â0.24) or professional occupation (Pâ=â.06). Knowledge about CTs was significantly different among the different categories of patients (Pâ=â.03), with the only statistically significant difference between groups being between oncologic patients receiving ambulatory chemotherapy and patients presenting with a chronic noncancerous disease (Pâ=â.004).This preliminary study clearly highlights that patients and health caregivers are not aware of CTs and that there is a need for better communication about CTs.