PDF(Pubmed)
Abstract：
BACKGROUND: 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.
RESULTS: Themes constructed include (1) Pride as Resistance, (2) Negotiating Normalcy and (3) The Significance of Time.
CONCLUSIONS: 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.
CONCLUSIONS: 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.
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.
RESULTS: Themes constructed include (1) Pride as Resistance, (2) Negotiating Normalcy and (3) The Significance of Time.
CONCLUSIONS: 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.
CONCLUSIONS: 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.
摘要：
背景：在关于胎儿和新生儿结局的文献中，以残疾为特征的短寿命的价值一直存在激烈争论。
方法：我们进行了范围审查，以总结有关13和18三体（T13/18）背景下家庭经验的现有经验文献，并随后对17篇文章进行主题分析。
结果：构造的主题包括（1）骄傲作为抵抗，(2)谈判常态和(3)时间的意义。
结论：我们的主题分析是由Hunt和Carnevale（2011）与VOICE（跨学科儿童伦理学观点）合作研究小组共同构想的道德经验框架指导的。
结论：本文将对支持T13/18医学和道德复杂景观的家庭的医疗保健专业人员和生物伦理学家感兴趣和有价值。
方法：我们进行了范围审查，以总结有关13和18三体（T13/18）背景下家庭经验的现有经验文献，并随后对17篇文章进行主题分析。
结果：构造的主题包括（1）骄傲作为抵抗，(2)谈判常态和(3)时间的意义。
结论：我们的主题分析是由Hunt和Carnevale（2011）与VOICE（跨学科儿童伦理学观点）合作研究小组共同构想的道德经验框架指导的。
结论：本文将对支持T13/18医学和道德复杂景观的家庭的医疗保健专业人员和生物伦理学家感兴趣和有价值。
