“她最终属于我了”：13三体和18三体综合征背景下家庭的道德体验——一项主题分析的范围综述
"She was finally mine": the moral experience of families in the context of trisomy 13 and 18- a scoping review with thematic analysis.
作者信息
Ritchie Zoe, Teachman Gail, Shaul Randi Zlotnik, Smith Maxwell J
机构信息
Faculty of Health Sciences and Rotman Institute of Philosophy, Western University, London, Ontario, Canada.
School of Occupational Therapy, Faculty of Health Sciences, Western University, London, Ontario, Canada.
出版信息
BMC Med Ethics. 2024 Mar 2;25(1):24. doi: 10.1186/s12910-023-00994-x.
INTRODUCTION
The value of a short life characterized by disability has been hotly debated in the literature on fetal and neonatal outcomes.
METHODS
We conducted a scoping review to summarize the available empirical literature on the experiences of families in the context of trisomy 13 and 18 (T13/18) with subsequent thematic analysis of the 17 included articles.
FINDINGS
Themes constructed include (1) Pride as Resistance, (2) Negotiating Normalcy and (3) The Significance of Time.
INTERPRETATION
Our thematic analysis was guided by the moral experience framework conceived by Hunt and Carnevale (2011) in association with the VOICE (Views On Interdisciplinary Childhood Ethics) collaborative research group.
RELEVANCE
This article will be of interest and value to healthcare professionals and bioethicists who support families navigating the medically and ethically complex landscape of T13/18.
引言
以残疾为特征的短暂生命的价值在有关胎儿和新生儿结局的文献中一直备受争议。
方法
我们进行了一项范围综述，以总结关于13三体和18三体（T13/18）背景下家庭经历的现有实证文献，并随后对纳入的17篇文章进行了主题分析。
结果
构建的主题包括（1）作为抵抗的骄傲，（2）协商常态，以及（3）时间的意义。
解读
我们的主题分析以亨特和卡内瓦莱（2011年）与跨学科儿童伦理学观点（VOICE）合作研究小组构想的道德体验框架为指导。
相关性
本文将对支持家庭应对T13/18医学和伦理复杂局面的医疗保健专业人员和生物伦理学家具有吸引力和价值。
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