van der Meide Hanneke, Teunissen Truus, Visser Leo H, Visse Merel
University of Humanistic Studies, Utrecht, The Netherlands.
Tilburg University, Tilburg, Tranzo Scientific Center for Care and welfare, The Netherlands.
Scand J Caring Sci. 2020 Mar;34(1):118-127. doi: 10.1111/scs.12713. Epub 2019 May 16.
Chronic obstructive and pulmonary disease (COPD) has detrimental effects on individuals with the disease. COPD causes breathlessness, morbidity and associated psychosocial distress. This study was guided by the phenomenological question what is it like to have COPD and situated in Van Manen's phenomenology of practice. Experiential material was gathered through phenomenological interviews. Four themes emerged from the lived experiences of patients living with COPD: breath as a possibility; being vigilant; fighting a losing battle; and feeling isolated from others. For patients with COPD, breathing becomes ever-present and shifts from the invisible background of daily living to the central activity around which everyday life is organised. COPD patients always monitor their own breath and scrutinise the environment on possible dangers that can affect their breathing. Whenever moving or being involved in an activity, a part of their mind is preoccupied with the breathing. Although COPD patients realise that no amount of good behaviour will matter and that the decline of their lungs is inevitable, they make every effort to take good care of their body. They anticipate and avoid triggers of breathlessness isolating them from social interactions and activities. The appearance of the body as a source of social embarrassment also has an isolating effect. This study shows that breathlessness is a constant horizon that frames the experience of COPD patients. It is a limiting factor and determines their entire life. A more profound understanding of these experiences in healthcare professionals will contribute to person-centred care for COPD patients.
慢性阻塞性肺疾病（COPD）对患该疾病的个体有不利影响。COPD会导致呼吸急促、发病以及相关的社会心理困扰。本研究以现象学问题“患COPD是什么样的体验”为导向，并基于范·曼恩的实践现象学。通过现象学访谈收集了经验材料。从COPD患者的生活经历中浮现出四个主题：呼吸成为一种可能；保持警惕；打一场必输的仗；以及感到与他人隔绝。对于COPD患者来说，呼吸变得无处不在，从日常生活中无形的背景转变为组织日常生活的核心活动。COPD患者总是监测自己的呼吸，并仔细检查环境中可能影响其呼吸的危险。每当移动或参与某项活动时，他们的一部分心思都放在呼吸上。尽管COPD患者意识到无论行为多么良好都无济于事，且肺部功能衰退不可避免，但他们仍竭尽全力照顾好自己的身体。他们预测并避免呼吸急促的诱因，从而使自己与社交互动和活动隔绝。身体外观成为社交尴尬之源也具有隔绝作用。本研究表明，呼吸急促是构成COPD患者体验的一个持续背景。它是一个限制因素，决定着他们的整个生活。医护人员对这些体验有更深刻的理解将有助于为COPD患者提供以患者为中心的护理。
