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Int J Qual Stud Health Well-being. 2020 Dec;15(1):1756686. doi: 10.1080/17482631.2020.1756686.
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'Spirituality' in Health Studies: Competing Spiritualities and the Elevated Status of Mindfulness.健康研究中的“灵性”:相互竞争的灵性观念与正念的崇高地位
J Relig Health. 2019 Oct;58(5):1605-1618. doi: 10.1007/s10943-019-00773-2.
2
Exploring the vagueness of Religion & Spirituality in complex pediatric decision-making: a qualitative study.探索宗教和灵性在复杂儿科决策中的模糊性:一项定性研究。
BMC Palliat Care. 2018 Sep 12;17(1):107. doi: 10.1186/s12904-018-0360-y.
3
Elements of Family-Centered Care in the Pediatric Intensive Care Unit: An Integrative Review.儿科重症监护病房以家庭为中心的护理要素:一项综合综述。
J Hosp Palliat Nurs. 2017 Jun;19(3):238-246. doi: 10.1097/NJH.0000000000000335.
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Examining the Experiences of Fathers of Children with a Life-Limiting Illness.审视患有危及生命疾病儿童的父亲们的经历。
J Soc Work End Life Palliat Care. 2016 Jan-Jun;12(1-2):126-44. doi: 10.1080/15524256.2016.1156601.
5
Parental Sources of Support and Guidance When Making Difficult Decisions in the Pediatric Intensive Care Unit.在儿科重症监护病房做出艰难决策时父母的支持与指导来源
J Pediatr. 2016 Feb;169:221-6.e4. doi: 10.1016/j.jpeds.2015.10.061. Epub 2015 Dec 2.
6
What information do parents need when facing end-of-life decisions for their child? A meta-synthesis of parental feedback.当父母面临为其孩子做出临终决定时,他们需要哪些信息?对父母反馈的元综合分析。
BMC Palliat Care. 2015 Apr 30;14:19. doi: 10.1186/s12904-015-0024-0.
7
Establishing psychosocial palliative care standards for children and adolescents with cancer and their families: An integrative review.为癌症患儿及其家庭建立心理社会姑息治疗标准:一项综合综述。
Palliat Med. 2016 Mar;30(3):212-23. doi: 10.1177/0269216315583446. Epub 2015 Apr 28.
8
Withholding and withdrawal of life-sustaining treatments in intensive care units in Asia.亚洲重症监护病房中生命维持治疗的暂缓和终止。
JAMA Intern Med. 2015 Mar;175(3):363-71. doi: 10.1001/jamainternmed.2014.7386.
9
East-West differences in perception of brain death. Review of history, current understandings, and directions for future research.东西方对脑死亡认知的差异。历史回顾、当前认识及未来研究方向。
J Bioeth Inq. 2015 Jun;12(2):211-25. doi: 10.1007/s11673-014-9564-x. Epub 2014 Jul 24.
10
Taiwanese parents' experience of making a "do not resuscitate" decision for their child in pediatric intensive care unit.台湾父母在儿科重症监护病房为其子女做出“不进行心肺复苏”决定的经历。
Asian Nurs Res (Korean Soc Nurs Sci). 2014 Mar;8(1):29-35. doi: 10.1016/j.anr.2013.12.002. Epub 2013 Dec 12.

在做决定前向民间神灵咨询:面临为处于生命维持状态且伴有脑干功能障碍的孩子做出临终决定的父母的精神实践。

Consulting with a folk deity before making decisions: spiritual practices in parents facing end-of-life decisions for their child on life support with brain stem dysfunction.

作者信息

Lin Shih-Chun, Huang Mei-Chih

机构信息

Department of Nursing, College of Medicine, National Cheng Kung University, Tainan, Taiwan.

出版信息

Int J Qual Stud Health Well-being. 2020 Dec;15(1):1756686. doi: 10.1080/17482631.2020.1756686.

DOI:10.1080/17482631.2020.1756686
PMID:32340564
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC7241511/
Abstract

Adolescents with brain stem dysfunction may undergo many invasive treatments, and parents are often faced with making the decision to withdraw treatment. However, in the face of their child's death, the spiritual practices of parents dealing with end-of-life decision-making remain under investigated. This study explores the spiritual practices in parents making end-of-life decisions for adolescents on life support with brain stem dysfunction. A descriptive phenomenological study was conducted through in-depth interviews with three parents of two adolescents in Taiwan. Data were analysed using Colaizzi's seven-step protocol. Three main themes emerged: (1) faith during decision-making, (2) struggles during decision-making, (3) transformation during decision-making. The findings indicate that "transforming the nature of hope" is the essence of the experience. Family-centred care, gaining insight into parental spiritual practices, and developing culturally-appropriate care are recommended.

摘要

患有脑干功能障碍的青少年可能会接受许多侵入性治疗,而父母常常面临着决定停止治疗的抉择。然而,面对孩子的死亡,父母在处理临终决策时的精神实践仍有待研究。本研究探讨了父母在为患有脑干功能障碍且依靠生命维持系统的青少年做出临终决策时的精神实践。通过对台湾两名青少年的三位父母进行深入访谈,开展了一项描述性现象学研究。数据采用科莱齐的七步法进行分析。出现了三个主要主题:(1)决策过程中的信念,(2)决策过程中的挣扎,(3)决策过程中的转变。研究结果表明,“转变希望的本质”是这种经历的核心。建议提供以家庭为中心的护理,深入了解父母的精神实践,并开展符合文化背景的护理。