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诊断出 13 三体或 18 三体综合征后进行围产期咨询:综合事实、父母价值观并维护选择。

Perinatal Counseling Following a Diagnosis of Trisomy 13 or 18: Incorporating the Facts, Parental Values, and Maintaining Choices.

机构信息

Department of Pediatrics, Medical College of Wisconsin, Milwaukee.

出版信息

Adv Neonatal Care. 2020 Jun;20(3):204-215. doi: 10.1097/ANC.0000000000000704.

Abstract

BACKGROUND

Families with a prenatal diagnosis of trisomy 13 or 18 are told many things, some true and some myths. They present with differing choices on how to proceed that may or may not be completely informed.

PURPOSE

To provide the prenatal counselor with a review of the pertinent obstetrical and neonatal outcome data and ethical discussion to help them in supporting families with the correct information for counseling.

METHODS/SEARCH STRATEGY: This article provides a review of the literature on facts and myths and provides reasonable outcome data to help families in decision making.

FINDINGS/RESULTS: These disorders comprise a heterogeneous group regarding presentation, outcomes, and parental goals. The authors maintain that there needs to be balanced decision-making between parents and providers for the appropriate care for the woman and her infant.

IMPLICATIONS FOR PRACTICE

Awareness of this literature can help ensure that prenatal and palliative care consultation incorporates the appropriate facts and parental values and in the end supports differing choices that can support the infant's interests.

摘要

背景

对于被诊断出患有 13 三体或 18 三体综合征的家庭,医生会告知他们很多信息,其中有些是真实的,有些则是谣言。他们可能会根据不同的选择来决定如何进行,这些选择可能是完全知情的,也可能不是。

目的

为产前咨询师提供相关产科和新生儿结局数据的回顾以及伦理讨论,以帮助他们为家庭提供正确的咨询信息。

方法/搜索策略:本文综述了关于事实和谣言的文献,并提供了合理的结局数据,以帮助家庭做出决策。

结果/发现:这些疾病在表现、结局和父母目标方面存在异质性。作者认为,需要在父母和提供者之间进行平衡的决策,为女性及其婴儿提供适当的护理。

对实践的影响

对该文献的认识可以帮助确保产前和姑息治疗咨询纳入适当的事实和父母价值观,并最终支持不同的选择,以支持婴儿的利益。

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