University of Kentucky Human Development Institute, USA.
University of Kentucky Human Development Institute, USA.
Disabil Health J. 2024 Jan;17(1):101514. doi: 10.1016/j.dhjo.2023.101514. Epub 2023 Aug 4.
Prenatal screening technology has consistently raised concerns regarding the conversations and information provided about disabilities, particularly given that research shows trauma related to negative prenatal screening and diagnosis experiences among parents of children with Down syndrome. OBJECTIVE: To determine what information obstetric medical providers (OB/MFMs) are most and least likely to provide when delivering prenatal screening/testing results about Down syndrome (DS), the subsequent impact of bias on prenatal screening experiences, and how these issues can be addressed through training, resources, and professional guidelines.
Online surveys were distributed to parents of children with DS born between 2016 and 2021 via local DS organizations and the national DS Diagnosis Network (April 2020-December 2021).
Of the 242 parents who completed the survey, a majority indicated that OB/MFMs were most likely to discuss medical issues and reproductive options while less than 40% reported that OB/MFMs discussed psychosocial outcomes, supports, and services. Respondents reported that the 61.3% of OB/MFMs who delivered the diagnosis as bad news or said "I'm sorry" were significantly less likely than their counterparts to provide information about life outcomes, supports and services, condition-specific resources, or more comprehensive prenatal care. Qualitative responses about screening/diagnosis experiences provided further context about the impact of implicit and explicit bias on the provision of accurate, up-to-date information.
To meet information needs during prenatal screening, OB/MFMs need access to accurate, balanced, and up-to-date information about disabilities and more training on disability cultural competency and how to deliver prenatal screening/testing results without implicit or explicit bias.
产前筛查技术一直引起人们对有关残疾的对话和信息提供的关注，尤其是因为研究表明，唐氏综合征患儿的父母在经历负面的产前筛查和诊断时会产生与创伤相关的问题。目的：确定产科医疗提供者（OB/MFM）在提供唐氏综合征（DS）产前筛查/检测结果时最有可能和最不可能提供哪些信息，以及这种偏见对产前筛查体验的后续影响，以及如何通过培训、资源和专业指南来解决这些问题。
通过当地 DS 组织和全国 DS 诊断网络（2020 年 4 月至 2021 年 12 月）向 2016 年至 2021 年期间出生的唐氏综合征患儿的父母在线分发问卷。
在完成调查的 242 位父母中，大多数人表示 OB/MFM 最有可能讨论医疗问题和生殖选择，而不到 40%的人表示 OB/MFM 讨论了心理社会结果、支持和服务。受访者报告说，61.3%的 OB/MFM 将诊断结果告知为坏消息或说“我很抱歉”的医生，他们比其他医生更不可能提供有关生活结果、支持和服务、特定疾病资源或更全面的产前护理的信息。关于筛查/诊断体验的定性回复进一步说明了在提供准确、最新信息方面，隐性和显性偏见的影响。
为了满足产前筛查期间的信息需求，OB/MFM 需要获得有关残疾的准确、平衡和最新信息，并且需要更多关于残疾文化能力以及如何在没有隐性或显性偏见的情况下提供产前筛查/检测结果的培训。
