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那时我希望自己知道的事……关于唐氏综合征咨询工作个人经历的反思

What I wish I knew then...reflections from personal experiences in counseling about Down syndrome.

作者信息

Brasington Campbell K

机构信息

Clinical Genetics, Carolinas Medical Center, 1100 Blythe Blvd., Charlotte, NC 28203, USA.

出版信息

J Genet Couns. 2007 Dec;16(6):731-4. doi: 10.1007/s10897-007-9116-1. Epub 2007 Aug 13.

DOI:10.1007/s10897-007-9116-1
PMID:17694396
Abstract

Sharing the news about a newborn baby's diagnosis of Down syndrome with families is a scenario genetic counselors frequently face. Yet often we may feel uncomfortable or unsure how to best support families in this setting in a way that will foster competence and resilience. This commentary is a reflection of one genetic counselor's experiences in counseling about Down syndrome over the course of her career and how her thinking has transitioned from a medical based model of disability to a more individual and family-focused model. Ideas and suggestions are offered that genetic counselors can incorporate into their practice.

摘要

与家庭分享新生儿被诊断出患有唐氏综合征的消息,是遗传咨询师经常面临的情况。然而,在这种情况下,我们常常会感到不安或不确定如何以一种培养能力和恢复力的方式,最好地支持这些家庭。这篇评论反映了一位遗传咨询师在其职业生涯中对唐氏综合征进行咨询的经历,以及她的思维是如何从基于医学的残疾模式转变为更关注个人和家庭的模式。文中还提供了一些想法和建议,遗传咨询师可以将其纳入自己的实践中。

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Breaking difficult news in a newborn setting: Down syndrome as a paradigm.在新生儿环境中传达坏消息:以唐氏综合征为例。
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What is a "balanced" description? Insight from parents of individuals with down syndrome.什么是“平衡”描述?来自唐氏综合征患者父母的见解。
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Part II: Clinical Practice Guidelines for adolescents and young adults with Down Syndrome: 12 to 21 Years.第二部分:唐氏综合征青少年及青年(12至21岁)临床实践指南。
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