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Comparison of end-of-life care in people with chronic obstructive pulmonary disease or lung cancer: A systematic review.慢性阻塞性肺疾病或肺癌患者临终关怀的比较:一项系统综述。
Palliat Med. 2020 Sep;34(8):1030-1043. doi: 10.1177/0269216320929556. Epub 2020 Jun 2.
2
Life and priorities before death: A narrative inquiry of uncertainty and end of life in people with heart failure and their family members.生命与临终优先事项:心力衰竭患者及其家庭成员的不确定性和生命终末期的叙事研究
Eur J Cardiovasc Nurs. 2020 Oct;19(7):629-637. doi: 10.1177/1474515120918355. Epub 2020 Apr 27.
3
A Qualitative Study of Pulmonary and Palliative Care Clinician Perspectives on Early Palliative Care in Chronic Obstructive Pulmonary Disease.慢性阻塞性肺疾病中早期姑息治疗的定性研究:肺科和姑息治疗临床医生的观点。
J Palliat Med. 2020 Apr;23(4):513-526. doi: 10.1089/jpm.2019.0355. Epub 2019 Oct 29.
4
End-of-life care in individuals with respiratory diseases: a population study comparing the dying experience between those with chronic obstructive pulmonary disease and lung cancer.呼吸疾病患者的临终关怀:一项比较慢性阻塞性肺疾病和肺癌患者临终体验的人群研究。
Int J Chron Obstruct Pulmon Dis. 2019 Jul 31;14:1691-1701. doi: 10.2147/COPD.S210916. eCollection 2019.
5
Support to informal caregivers of patients with severe chronic obstructive pulmonary disease: a qualitative study of caregivers' and professionals' experiences in Swedish hospitals.支持重症慢性阻塞性肺疾病患者的非正式照护者:瑞典医院中照护者和专业人员经验的定性研究。
BMJ Open. 2019 Aug 10;9(8):e028720. doi: 10.1136/bmjopen-2018-028720.
6
A Formative Evaluation of Patient and Family Caregiver Perspectives on Early Palliative Care in Chronic Obstructive Pulmonary Disease across Disease Severity.慢性阻塞性肺疾病疾病严重程度不同的患者和家属对早期姑息治疗的看法的形成性评估。
Ann Am Thorac Soc. 2019 Aug;16(8):1024-1033. doi: 10.1513/AnnalsATS.201902-112OC.
7
Enlightening chronic obstructive pulmonary disease through patients' and caregivers' narratives.通过患者及其照顾者的叙述来解读慢性阻塞性肺疾病。
Int J Chron Obstruct Pulmon Dis. 2018 Oct 5;13:3095-3105. doi: 10.2147/COPD.S172214. eCollection 2018.
8
Living with dying: A narrative inquiry of people with chronic kidney disease and their family members.与死亡共存:慢性肾脏病患者及其家属的叙事研究。
J Adv Nurs. 2019 Jan;75(1):129-137. doi: 10.1111/jan.13830. Epub 2018 Sep 17.
9
Family Caregivers' Heavy and Overloaded Burden in Advanced Chronic Obstructive Pulmonary Disease.晚期慢性阻塞性肺疾病患者家庭照顾者的沉重和超负荷负担。
J Palliat Med. 2018 Dec;21(12):1768-1772. doi: 10.1089/jpm.2018.0010. Epub 2018 Aug 17.
10
End of life in COPD patients: 
time for a change.慢性阻塞性肺疾病患者的生命末期:是时候做出改变了。
Breathe (Sheff). 2017 Dec;13(4):e84-e86. doi: 10.1183/20734735.013617.

午夜倒计时:对患有晚期 COPD 并即将离世的患者及其家属的叙事研究

Ten minutes to midnight: a narrative inquiry of people living with dying with advanced copd and their family members.

机构信息

Faculty of Nursing, University of Alberta, Edmonton, AB, Canada.

School of Nursing, Division of Teaching and Learning Support and Innovation, University of Victoria, Victoria, BC, Canada.

出版信息

Int J Qual Stud Health Well-being. 2021 Dec;16(1):1893146. doi: 10.1080/17482631.2021.1893146.

DOI:10.1080/17482631.2021.1893146
PMID:33683185
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC7946051/
Abstract

: To explore how people with end stage chronic obstructive pulmonary disease and their family members describe living in the face of impending death.: A narrative inquiry was undertaken using a social constructionist perspective. Data were collected in 2017-18 in two in-depth interviews, lasting 90 to 120 minutes approximately 3-4 months apart, with a telephone follow-up 2-3 months later. Thematic analysis was conducted including analysis within and across participants.: Sixteen people with advanced chronic obstructive pulmonary disease and seven family members participated. For both people with the disease and family members, six key themes/storylines emerged including missing life, being vigilant, hope and realism, avoiding death talk, the scary dying process, and need to prepare.: This study highlighted six key storylines about death and dying with advanced chronic obstructive pulmonary disease for people with the illness and their family members. The participants with the illness and their family members held similar perceptions about end of life. More supports are needed for people with advanced chronic obstructive pulmonary disease and their family members in living with their illness while ensuring that they experience a "good death."

摘要

目的

探索终末期慢性阻塞性肺疾病患者及其家属在面对死亡时的生活描述。:采用社会建构主义视角进行叙述性探究。数据收集于 2017-18 年,采用 2 次深度访谈,每次持续约 90-120 分钟,间隔约 3-4 个月,并在 2-3 个月后进行电话随访。进行主题分析,包括参与者内部和之间的分析。:16 名晚期慢性阻塞性肺疾病患者和 7 名家属参与。对于患者和家属来说,出现了六个关键主题/故事情节,包括错过生命、保持警惕、希望与现实、避免谈论死亡、可怕的死亡过程以及需要准备。:本研究强调了晚期慢性阻塞性肺疾病患者及其家属关于死亡和临终的六个关键故事情节。患有疾病的患者及其家属对生命末期有相似的看法。需要为晚期慢性阻塞性肺疾病患者及其家属提供更多支持,让他们在患病的同时生活,并确保他们经历“善终”。