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- Sigurgeirsdottir, Jonina, et al.
(författare)
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COPD patients' experiences, self-reported needs, and needs-driven strategies to cope with self-management
- 2019
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Ingår i: The International Journal of Chronic Obstructive Pulmonary Disease. - 1176-9106 .- 1178-2005. ; 14, s. 1033-1043
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Tidskriftsartikel (refereegranskat)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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- Sigurgeirsdottir, Jonina, et al.
(författare)
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Ethical Dilemmas in Physicians? : Consultations with COPD Patients
- 2022
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Ingår i: The International Journal of Chronic Obstructive Pulmonary Disease. - : Informa UK Limited. - 1176-9106 .- 1178-2005. ; 17, s. 977-991
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Tidskriftsartikel (refereegranskat)abstract
- Aim: This phenomenological study was aimed at exploring principal physicians’ (participants’) experience of attending to COPD patients and motivating their self-management, in light of the GOLD clinical guidelines of COPD therapy.Methods: Interviews were conducted with nine physicians, who had referred patients to PR, five general practitioners (GPs) and four lung specialists (LSs). The interviews were recorded, transcribed, and analyzed through a process of deconstruction and reconstruction.Results: The participants experienced several ethical dilemmas in being principal physicians of COPD patients and motivating their self-management; primarily in the balancing act of adhering to the Hippocratic Oath of promoting health and saving lives, while respecting their patients’ choice regarding non-adherence eg, by still smoking. It was also a challenge to deal with COPD as a nicotine addiction disease, deal with patients’ denial regarding the harm of smoking and in motivating patient mastery of the disease. The participants used various strategies to motivate their patients’ self-management such as active patient education, enhancing the patients’ inner motivation, by means of an interdisciplinary approach, involving the patients’ significant other when appropriate, and by proposing PR.Conclusion: The findings indicate that being a principal physician of COPD patients and motivating their self-management is a balancing act, involving several dilemmas. Patients’ nicotine addiction and physicians’ ethical obligations are likely to create ethical dilemmas as the physician is obligated to respect the patients’ will, even though it contradicts what is best for the patient. The participants suggest strategies to motivate COPD patients’ self-management.
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- Sigurgeirsdottir, Jonina, et al.
(författare)
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Frustrated Caring : Family Members' Experience of Motivating COPD Patients Towards Self-Management
- 2020
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Ingår i: The International Journal of Chronic Obstructive Pulmonary Disease. - 1176-9106 .- 1178-2005. ; 15, s. 2953-2965
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Tidskriftsartikel (refereegranskat)abstract
- Aim: The aim of this phenomenological study was to explore principal family members' experience of motivating patients with chronic obstructive pulmonary disease (COPD) towards self-management.Methods: Interviews were conducted with 10 family members (spouses and adult children) of COPD patients. The interviews were audio recorded, transcribed and analyzed thematically.Results: Being a principal family member of a COPD patient is characterized by frustrated caring; wanting the best for him/her and yet carrying a heavier burden than the person feels equipped for, lacking both knowledge about the disease progress and information about available healthcare resources. The situation demands much energy, due to COPD patients' lack of stamina; family members' fear of the patient's possible breathlessness; willingness to help, though sometimes meeting with negative reactions from the patient; and feeling ignored by health professionals (HPs). Family members expressed a need for a formal connection between patient-family-HPs. The increasing burden experienced by patients' family members is characterized by a sequential process in three phases of the patient's declining self-management. In the early phase, family and patient are ignorant of COPD yet recognize the patient's smoking as a risky lifestyle. In the intermediary phase, signs of COPD become evident to the family. The first turning point is when the family first observes the patient's acute exacerbation. A second turning point is in the advanced phase, when family and patient recognize COPD as a progressive disease, possibly fatal. We also identified family members' views on COPD patients' needs, and their own roles, main frustrations and concerns.Conclusion: Family members' experience of motivating COPD patients towards self-management is a sequential process where the family experiences advancing caring burden and declining self-management by the patient. We propose the establishment of COPD patients' teams consisting of patient-family-HP, aimed at the patients' best possible self-management.
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