Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2019 May 16:14:1033-1043.
doi: 10.2147/COPD.S201068. eCollection 2019.

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

Jonina Sigurgeirsdottir  1   2 , Sigridur Halldorsdottir  3 , Ragnheidur Harpa Arnardottir  3   4   5 , Gunnar Gudmundsson  1   6 , Eythor Hreinn Bjornsson  2
Affiliations

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

Jonina Sigurgeirsdottir et al. Int J Chron Obstruct Pulmon Dis. .

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.

Keywords: COPD; patients’ needs; pulmonary rehabilitation; qualitative research; self-management.

PubMed Disclaimer

Conflict of interest statement

The authors report no conflicts of interest in this work.

Figures

Figure 1
Figure 1
The Vancouver School of Doing Phenomenology. The Vancouver School involves 12 steps, and in each step, the cycle is repeated.Note: Modified from Halldorsdottir S. The Vancouver School of doing Phenomenology. In: Fridlund BHCE, editor. Qualitative Research Methods in the Service of Health. Lund: Studentlitteratur; 2000: page 56.
Figure 2
Figure 2
Participants’ self-management needs when coping with COPD, their needs-driven coping strategies, and other available strategies.
Figure 3
Figure 3
The perpetuating cycle of dyspnea, anxiety, and fear of possible breathlessness that can cause a panic attack.
See this image and copyright information in PMC

Similar articles

See all similar articles

Cited by

See all "Cited by" articles

References

    1. Janssen DJ, Engelberg RA, Wouters EF, Curtis JR. Advance care planning for patients with COPD: past, present and future. Patient Educ Couns. 2012;86(1):19–24. doi:10.1016/j.pec.2011.01.007 - DOI - PubMed
    1. Gudmundsson G. [Acute exacerbations of chronic obstructive pulmonary disease - review]. Laeknabladid. 2015;101(7–8):357–362. - PubMed
    1. Kendall M, Carduff E, Lloyd A, et al. Different experiences and goals in different advanced diseases: comparing serial interviews with patients with cancer, organ failure, or frailty and their family and professional carers. J Pain Symptom Manag. 2015;50(2):216–224. doi:10.1016/j.jpainsymman.2015.02.017 - DOI - PubMed
    1. Pooler A, Beech R. Examining the relationship between anxiety and depression and exacerbations of COPD which result in hospital admission: a systematic review. Int J Chron Obstruct Pulmon Dis. 2014;9:315–330. doi:10.2147/COPD.S60179 - DOI - PMC - PubMed
    1. Hayen A, Herigstad M, Pattinson KT. Understanding dyspnea as a complex individual experience. Maturitas. 2013;76(1):45–50. doi:10.1016/j.maturitas.2013.09.002 - DOI - PubMed

MeSH terms