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

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.

Journal

Journal ID (nlm-ta): Int J Chron Obstruct Pulmon Dis

Journal ID (iso-abbrev): Int J Chron Obstruct Pulmon Dis

Journal ID (publisher-id): COPD

Journal ID (pmc): copd

Title: International Journal of Chronic Obstructive Pulmonary Disease

Publisher: Dove

ISSN (Print): 1176-9106

ISSN (Electronic): 1178-2005

Publication date (Electronic): 16 May 2019

Publication date Collection: 2019

Volume: 14

Pages: 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 [phone]Email www.jonina@ 123456reykjalundur.is

Article

Publisher ID: 201068

DOI: 10.2147/COPD.S201068

PMC ID: 6529673

Copyright statement: © 2019 Sigurgeirsdottir et al.

License:

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Page count

Figures: 3, Tables: 4, References: 35, Pages: 11

Categories

Subject: Original Research