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,3–5 Gunnar Gudmundsson,1,6 Eythor Hreinn Bjornsson21Faculty of Medicine, University of Iceland, Reykjavik, Iceland; 2Reykjalundur Rehabilitation Center, Mosfellsbaer, Iceland; 3School of Health Sciences, University of Akureyri, Akureyri, Iceland; 4Department of Rehabilitation, Akureyri Hospital, Akureyri, Iceland; 5Department of Medical Sciences, Respiratory-, Allergy-, and Sleep Research, Uppsala University, Uppsala, Sweden; 6Department of Respiratory Medicine, Landspitali University Hospital, Reykjavik, IcelandBackground: 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, self-management, pulmonary rehabilitation, qualitative research