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

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.

<p>Frustrated Caring: Family Members’ Experience of Motivating COPD Patients Towards Self-Management</p>

“…1 Family caregiving is important in COPD care and patients' self-management support, yet reference to caregivers is largely absent, even in policy documents and research agendas, and little guidance is available on how caregivers can fulfil their role. 1,2 Insufficient support from health professionals (HPs) has been observed, [3][4][5][6][7][8][9] and families may experience a burden similar to suffering from chronic illness themselves. 8 Researchers call for a comprehensive focus on caregivers' role in motivating COPD patients towards selfmanagement 1,2,[10][11][12][13][14] where the goal to optimize patients' health, reduce symptoms and increase function, involves the establishment of alliances with HPs, family, friends and community.…”

Prevalence and associated factors of depression among Korean adolescents

“…By contrast, modifiable protective factors against depression include lifestyle factors such as prosocial involvement in a family context [16] and adaptive coping strategies (e.g., focusing on the positive, problem solving, and seeking social support) that stem from a positive mindset [8, 15]. Notably, many previous studies have posited the importance of a positive mindset (e.g., self-efficacy [17, 18], optimism [19], acceptance [20], resilience [21], and gratitude [22, 23]) in helping patients and caregivers to cope with debilitating medical illnesses such as chronic obstructive pulmonary disease, Parkinson’s disease, and multiple sclerosis [19–21, 24, 25]; in fostering healthy development in children facing physical disability after trauma [17]; and in enhancing academic achievement [25, 26], elite sports performance [18], and creative art work [27]. Moreover, the presence of a positive mindset, such as that reflected in resilience, was associated with greater positive affect and reduced depression in community-dwelling middle-aged adults [28].…”

Adherence to an eHealth Self-Management Intervention for Patients with Both COPD and Heart Failure: Results of a Pilot Study

“…14 Adherence to self-management interventions in patients with chronic diseases like COPD and CHF might be influenced by factors, such as age, social support, disease perception and knowledge, the role of the healthcare provider and case manager, (digital) health literacy, and to what level an intervention fits a patient's needs and competences. [17][18][19][20][21][22][23][24][25] Electronic health (eHealth) could play an important role in improving adherence, as it makes it easier to provide tailored information, give reminders, and adapt to patients' needs. 21,[26][27][28][29] Self-management interventions are increasingly provided to patients with COPD or CHF by using eHealth technology at home to support patients in health communication (eg teleconsultation), selfmonitoring (eg symptom diary, wearables), and their medical treatment (eg self-treatment with prednisolone).…”