Faculty of Medicine, University of Iceland, Reykjavik, Iceland.
Reykjalundur Rehabilitation Center, Mosfellsbaer, Iceland.
Int J Chron Obstruct Pulmon Dis. 2019 May 16;14:1033-1043. doi: 10.2147/COPD.S201068. eCollection 2019.
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. 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. 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. 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.
COPD 是一种常见的发病率和死亡率的原因。本研究的目的是探讨患者的经验,自我报告的需求和需求驱动的策略,以应对 COPD 的自我管理。在这项现象学研究中,10 名轻度至重度 COPD 患者接受了 1-2 次访谈,直到达到数据饱和。共进行了 15 次深入访谈,记录,转录和分析。COPD 严重影响了患者的身体和心理社会健康,他们的家庭关系和社会生活。他们描述了自己在 COPD 中的经历,就像在一个不断缩小的世界中,在没有武器的情况下进行一场没有武器的战争,在大多数层面上失去了自由,总是担心可能会出现呼吸困难。确定了 14 项需求,并确定了参与者用于应对 COPD 自我管理的 8 个需求驱动策略集群。应对 COPD 这一危及生命的疾病的现实意味着要应对呼吸困难,窒息感,难以形容的吸烟成瘾,焦虑和缺乏对疾病的了解。减少参与家庭和社会生活意味着丧失了执行通常和珍贵活动的能力。保持积极的心态,接受帮助和承担健康的生活方式很重要,同时还要接受持续的专业医疗保健服务。参与者的需求驱动策略包括进行财务安排,保持希望和与吸烟成瘾作斗争,寻求 COPD 知识,改变思维方式,面对健康护理链的断裂以及努力接受支持。拖延和回避也很明显。最后,该研究还发现,由于 COPD,患者经历了一个持续的呼吸困难,焦虑和对呼吸困难的恐惧循环,这可能导致更严重的呼吸困难甚至恐慌发作。COPD 严重影响患者的身体和心理社会健康,家庭关系和社会生活。确定患者的自我报告需求和需求驱动策略可以使临床医生通过教育患者来增强他们的自我管理能力,从而赋予患者权力。