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COPD patients' experiences, self-reported needs, and needs-driven strategies to cope with self-management
Univ Iceland, Fac Med, Reykjavik, Iceland;Reykjalundur Rehabil Ctr, Mosfellsbaer, Iceland.
Univ Akureyri, Sch Hlth Sci, Akureyri, Iceland.
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Medical Sciences, Lung- allergy- and sleep research. Univ Akureyri, Sch Hlth Sci, Akureyri, Iceland;Akureyri Hosp, Dept Rehabil, Akureyri, Iceland.
Univ Iceland, Fac Med, Reykjavik, Iceland;Landspitali Univ Hosp, Dept Resp Med, Reykjavik, Iceland.
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2019 (English)In: The International Journal of Chronic Obstructive Pulmonary Disease, ISSN 1176-9106, E-ISSN 1178-2005, Vol. 14, p. 1033-1043Article in journal (Refereed) Published
Abstract [en]

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.

Place, publisher, year, edition, pages
2019. Vol. 14, p. 1033-1043
Keywords [en]
COPD, patients' needs, self-management, pulmonary rehabilitation, qualitative research
National Category
Respiratory Medicine and Allergy
Identifiers
URN: urn:nbn:se:uu:diva-384472DOI: 10.2147/COPD.S201068ISI: 000468107600001OAI: oai:DiVA.org:uu-384472DiVA, id: diva2:1323019
Available from: 2019-06-11 Created: 2019-06-11 Last updated: 2019-06-11Bibliographically approved

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