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“尊严如不熄灭的小火苗!”:一项对晚期慢性阻塞性肺疾病患者的现象学诠释研究。

"Dignity as a Small Candle Flame That Doesn't Go Out!": An Interpretative Phenomenological Study with Patients Living with Advanced Chronic Obstructive Pulmonary Disease.

机构信息

School of Health Sciences, Polytechnic of Leiria, Campus 2, Morro do Lena-Alto do Vieiro, Apartado 4137, 2411-901 Leiria, Portugal.

Centre for Innovative Care and Health Technology (ciTechCare), Polytechnic of Leiria, Rua de Santo André-66-68, Campus 5, 2410-541 Leiria, Portugal.

出版信息

Int J Environ Res Public Health. 2022 Dec 18;19(24):17029. doi: 10.3390/ijerph192417029.

Abstract

Long-term illness, such as chronic obstructive pulmonary disease (COPD), can expose people to existential suffering that threatens their dignity. This qualitative study explored the lived experiences of patients with advanced COPD in relation to dignity. An interpretative phenomenological approach based on lifeworld existentials was conducted to explore and understand the world of the lived experience. Twenty individuals with advanced COPD (GOLD [Global Initiative for Chronic Obstructive Lung Disease] stages III and IV) were selected using a purposive sampling strategy. In-depth interviews were used to collect data, which were then analysed using Van Manen's phenomenology of practice. The existential experience of dignity was understood, in essence, as "a small candle flame that doesn't go out!". Four intertwined constituents illuminated the phenomenon: "Lived body-balancing between sick body and willingness to continue"; "Lived relations-balancing between self-control and belongingness"; "Lived Time-balancing between past, present and a limited future"; and "Lived space-balancing between safe places and non-compassionate places". This study explains how existential life phenomena are experienced during the final phases of the COPD trajectory and provides ethical awareness of how dignity is lived. More research is needed to investigate innovative approaches to manage complex care in advanced COPD, in order to assist patients in discovering their inner resources to develop and promote dignity.

摘要

长期疾病,如慢性阻塞性肺疾病(COPD),可能会使患者面临威胁尊严的存在性痛苦。本定性研究探讨了晚期 COPD 患者的尊严相关生活体验。采用基于生活世界存在主义的解释现象学方法,探索和理解生活体验的世界。采用目的性抽样策略选择 20 名晚期 COPD 患者(GOLD [全球慢性阻塞性肺疾病倡议] III 和 IV 期)。使用深度访谈收集数据,然后使用范马南的实践现象学进行分析。尊严的存在体验本质上被理解为“不灭的小火苗!”。四个交织的组成部分照亮了这一现象:“生活中的身体——在病态身体和继续生活的意愿之间保持平衡”;“生活中的关系——在自我控制和归属感之间保持平衡”;“生活中的时间——在过去、现在和有限的未来之间保持平衡”;以及“生活中的空间——在安全的地方和无情的地方之间保持平衡”。本研究解释了 COPD 病程的最后阶段如何体验存在性生命现象,并提供了关于如何体验尊严的伦理意识。需要进一步研究创新方法来管理晚期 COPD 的复杂护理,以帮助患者发现内在资源,培养和促进尊严。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/1538/9778832/649aa46fd48b/ijerph-19-17029-g001.jpg

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