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      COPD patients’ experiences, self-reported needs, and needs-driven strategies to cope with self-management

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          Abstract

          Background: COPD is a common cause of morbidity and mortality. The aim of this study was to explore patients’ experiences, self-reported needs, and needs-driven strategies to cope with self-management of COPD.

          Patients and methods: In this phenomenological study, 10 participants with mild to severe COPD were interviewed 1–2 times, until data saturation was reached. In total, 15 in-depth interviews were conducted, recorded, transcribed, and analyzed.

          Results: COPD negatively affected participants’ physical and psychosocial well-being, their family relationships, and social life. They described their experiences of COPD like fighting a war without weapons in an ever-shrinking world with a loss of freedom at most levels, always fearing possible breathlessness. Fourteen needs were identified and eight clusters of needs-driven strategies that participants used to cope with self-management of COPD. Coping with the reality of COPD, a life-threatening disease, meant coping with dyspnea, feelings of suffocation, indescribable smoking addiction, anxiety, and lack of knowledge about the disease. Reduced participation in family and social life meant loss of ability to perform usual and treasured activities. Having a positive mindset, accepting help and assuming healthy lifestyle was important, as well as receiving continuous professional health care services. The participants’ needs-driven strategies comprised conducting financial arrangements, maintaining hope, and fighting their smoking addiction, seeking knowledge about COPD, thinking differently, facing the broken chain of health care, and struggling with accepting support. Procrastination and avoidance were also evident. Finally, the study also found that participants experienced a perpetuating cycle of dyspnea, anxiety, and fear of breathlessness due to COPD which could lead to more severe dyspnea and even panic attacks.

          Conclusion: COPD negatively affects patients’ physical and psychosocial well-being, family relationships and, social life. Identifying patients’ self-reported needs and needs-driven strategies can enable clinicians to empower patients by educating them to improve their self-management.

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          Most cited references 27

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          An Official American Thoracic Society/European Respiratory Society Policy Statement: Enhancing Implementation, Use, and Delivery of Pulmonary Rehabilitation.

          Pulmonary rehabilitation (PR) has demonstrated physiological, symptom-reducing, psychosocial, and health economic benefits for patients with chronic respiratory diseases, yet it is underutilized worldwide. Insufficient funding, resources, and reimbursement; lack of healthcare professional, payer, and patient awareness and knowledge; and additional patient-related barriers all contribute to the gap between the knowledge of the science and benefits of PR and the actual delivery of PR services to suitable patients.
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            Is Open Access

            A telehealth program for self-management of COPD exacerbations and promotion of an active lifestyle: a pilot randomized controlled trial

            The objective of this pilot study was to investigate the use of and satisfaction with a chronic obstructive pulmonary disease (COPD) telehealth program applied in both primary and secondary care. The program consisted of four modules: 1) activity coach for ambulant activity monitoring and real-time coaching of daily activity behavior, 2) web-based exercise program for home exercising, 3) self-management of COPD exacerbations via a triage diary on the web portal, including self-treatment of exacerbations, and 4) teleconsultation. Twenty-nine COPD patients were randomly assigned to either the intervention group (telehealth program for 9 months) or the control group (usual care). Page hits on the web portal showed the use of the program, and the Client Satisfaction Questionnaire showed satisfaction with received care. The telehealth program with decision support showed good satisfaction (mean 26.4, maximum score 32). The program was accessed on 86% of the treatment days, especially the diary. Patient adherence with the exercise scheme was low (21%). Health care providers seem to play an important role in patients’ adherence to telehealth in usual care. Future research should focus on full-scale implementation in daily care and investigating technological advances, like gaming, to increase adherence.
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              • Record: found
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              • Article: not found

              Promoting effective self-management programmes to improve COPD.

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                Author and article information

                Journal
                Int J Chron Obstruct Pulmon Dis
                Int J Chron Obstruct Pulmon Dis
                COPD
                copd
                International Journal of Chronic Obstructive Pulmonary Disease
                Dove
                1176-9106
                1178-2005
                16 May 2019
                2019
                : 14
                : 1033-1043
                Affiliations
                [1 ]Faculty of Medicine, University of Iceland , Reykjavik, Iceland
                [2 ]Reykjalundur Rehabilitation Center , Mosfellsbaer, Iceland
                [3 ]School of Health Sciences, University of Akureyri , Akureyri, Iceland
                [4 ]Department of Rehabilitation, Akureyri Hospital , Akureyri, Iceland
                [5 ]Department of Medical Sciences, Respiratory-, Allergy-, and Sleep Research, Uppsala University , Uppsala, Sweden
                [6 ]Department of Respiratory Medicine, Landspitali University Hospital , Reykjavik, Iceland
                Author notes
                Correspondence: Jonina SigurgeirsdottirQuality Management, Reykjalundur Rehabilitation Center , 270Mosfellsbaer, IcelandTel +354 626 1740Email www.jonina@ 123456reykjalundur.is
                Article
                201068
                10.2147/COPD.S201068
                6529673
                © 2019 Sigurgeirsdottir 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: 3, Tables: 4, References: 35, Pages: 11
                Categories
                Original Research

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