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

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          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.

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          Most cited references17

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          Review and meta-analysis of couple-oriented interventions for chronic illness.

          Evidence continues to build for the impact of the marital relationship on health as well as the negative impact of illness on the partner. Targeting both patient and partner may enhance the efficacy of psychosocial or behavioral interventions for chronic illness. The purpose of this report is to present a cross-disease review of the characteristics and findings of studies evaluating couple-oriented interventions for chronic physical illness. We conducted a qualitative review of 33 studies and meta-analyses for a subset of 25 studies. Identified studies focused on cancer, arthritis, cardiovascular disease, chronic pain, HIV, and Type 2 diabetes. Couple interventions had significant effects on patient depressive symptoms (d = 0.18, p < 0.01, k = 20), marital functioning (d = 0.17, p < 0.01, k = 18), and pain (d = 0.19, p < 0.01, k = 14) and were more efficacious than either patient psychosocial intervention or usual care. Couple-oriented interventions have small effects that may be strengthened by targeting partners' influence on patient health behaviors and focusing on couples with high illness-related conflict, low partner support, or low overall marital quality. Directions for future research include assessment of outcomes for both patient and partner, comparison of couple interventions to evidence-based patient interventions, and evaluation of mechanisms of change.
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            Efficacy of therapeutic patient education in chronic diseases and obesity.

            To evaluate the clinical, methodological and reporting aspects of systematic reviews and meta-analyses in order to determine the efficacy of therapeutic patient education (TPE). A thorough search of the medical and nursing literature recorded in MedLine database from 1999 to August 2009 was conducted using the keywords: patient education, efficacy, diabetes, asthma, COPD, hypertension, cardiology, obesity, rheumatology, and oncology. Thirty five relevant meta-analyses were identified and initially selected for critical analyses (598 studies concerning approximately 61,000 patients). The detailed description of the educative intervention was present in 4% of articles whereas in 23% the interventions were briefly described. In the majority of studies, the educative interventions were only named (49%) or totally absent (24%). The majority of studies reported improvement of patient outcomes due to the TPE (64%), 30% of studies reported no effect of TPE and 6% of the analysed reviews and meta-analyses reported worsening of measured outcomes. Patient education could improve patient outcomes. The high benefit from TPE was shown by articles with detailed description of educational intervention as well as by those who report multidimensional and multidisciplinary educational intervention. The impact of therapeutic patient education on health outcomes is 50-80%. Copyright 2010 Elsevier Ireland Ltd. All rights reserved.
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              Multiple family discussion groups for patients with chronic medical illness.

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                Author and article information

                Journal
                Patient Prefer Adherence
                Patient Prefer Adherence
                PPA
                ppa
                Patient preference and adherence
                Dove
                1177-889X
                07 January 2020
                2020
                : 14
                : 45-53
                Affiliations
                [1 ]Université de Paris, LPPS , Boulogne-Billancourt F-92100, France
                [2 ]Private Practice , Paris, France
                [3 ]Rheumatology Department, Hospital of Metz-Thionville , Metz, France
                [4 ]Université de Lorraine, Paris Descartes University, EA 4360 APEMAC , Nancy, France
                [5 ]Centre Hospitalier Universitaire Caen Normandie , Caen, France
                [6 ]Rheumatology Department, Saint Antoine Hospital, Assistance Publique Hôpitaux de Paris , Paris, France
                [7 ]Rheumatology Department, Cochin Hospital, Assistance Publique Hôpitaux de Paris , Paris, France
                Author notes
                Correspondence: Aurélie Untas Laboratory of Psychopathology and Health Processes EA 4057, Université de Paris , 71 Avenue Edouard Vaillant, Boulogne-Billancourt92100, FranceTel +33 176533050 Email aurelie.untas@u-paris.fr
                Article
                231919
                10.2147/PPA.S231919
                6955756
                1794ffcd-d3df-4579-b15d-0efebef7bc34
                © 2020 Untas et al.

                This work is published and licensed by Dove Medical Press Limited. The full terms of this license are available at https://www.dovepress.com/terms.php and incorporate the Creative Commons Attribution – Non Commercial (unported, v3.0) License ( http://creativecommons.org/licenses/by-nc/3.0/). By accessing the work you hereby accept the Terms. Non-commercial uses of the work are permitted without any further permission from Dove Medical Press Limited, provided the work is properly attributed. For permission for commercial use of this work, please see paragraphs 4.2 and 5 of our Terms ( https://www.dovepress.com/terms.php).

                Page count
                Figures: 1, Tables: 1, References: 20, Pages: 9
                Categories
                Original Research

                Medicine
                caregivers,patient education,disease management,chronic arthritis,quality of life,partner
                Medicine
                caregivers, patient education, disease management, chronic arthritis, quality of life, partner

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