关于残疾的隐性和明确偏见对父母在产前查和测试期间提供的经验和信息的影响
Stephanie Meredith1, Sierra Weiss1, Harold L Kleinert1
1University of Kentucky Human Development Institute, USA.
Disability and health journal
|August 26, 2023
概括
产科提供者在讨论唐氏综合征 (DS) 产前查结果时,经常关注医疗问题和生殖选择. 需要更多的培训,以确保向家长提供公正,全面的信息.
科学领域:
- 医学遗传学 医学遗传学
- 产前诊断 在产前诊断
- 关于残疾人的研究.
背景情况:
- 针对残疾的产前查引发了人们对信息传递和家长经验的担忧.
- 关于产前查和唐氏综合征 (DS) 诊断的负面经验可能会造成创伤.
研究的目的:
- 确定产科医疗提供者 (OB/MFMs) 关于唐氏综合征 (DS) 产前查结果的信息.
- 评估偏见对产前查经验的影响.
- 通过培训和专业指南探索解决方案.
主要方法:
- 在线调查对2016年至2021年之间出生的DS儿童的父母进行了在线调查.
- 数据收集时间为2020年4月至2021年12月.
- 参与者通过DS组织和国家DS诊断网络招募.
主要成果:
- OB/MFMs最常讨论的是医疗问题和生殖选择;心理社会支持信息较少 (<40%).
- 当诊断带有负面框架 (例如",坏消息"",我很抱歉") 时,提供者不太可能提供有关结果,支持或资源的全面信息.
- 定性数据强调了隐性和明确偏见对信息提供的影响.
结论:
- OB/MFMs需要获得准确,平衡的关于残疾的信息.
- 对提供者来说,加强残疾人文化能力培训至关重要.
- 培训应专注于提供产前查/测试结果,而无隐含或明确的偏见.
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