唐氏综合征儿童的父母反思他们的产后诊断,2003-2022年
Jonathan M Artal1,2, Lindsey Randall3,4, Sabina Rubeck5
1Stanford Law School, Stanford University, Stanford, California, USA.
American journal of medical genetics. Part A
|April 15, 2024
概括
自2003年以来,唐氏综合征 (DS) 诊断后的家长支持没有得到改善. 许多父母仍然受到同情和信息不足的照顾,导致恐惧和焦虑.
科学领域:
- 医学社会学 医学社会学
- 遗传学和公共卫生
- 儿科护理 儿科护理
背景情况:
- 2003年的一项调查强调了父母在唐氏综合征诊断后对产后支持的重大不满.
- 担忧包括提供者以怜悯的方式传达诊断,缺乏足够的解释材料.
研究的目的:
- 评估自2003年调查以来,父母与出生后唐氏综合征诊断的经验是否有所改善.
- 为了识别影响父母恐惧和焦虑的特定提供者的行为.
主要方法:
- 一项混合方法调查分发给2003年至2022年期间被诊断患有唐氏综合征的儿童的家庭.
- 定量分析比较了2003年和2022年的调查数据;定性分析检查了开放式的答案.
主要成果:
- 父母对产后护理的看法没有得到改善;负面经历一直存在或恶化.
- 很高的比例的家长报告说,提供者对他们感到同情 (越来越有可能),忽略了唐氏综合征的积极方面,解释材料不足 (仅有24%是充足的).
- 报告有显著的家长恐惧 (77%) 和焦虑 (79%),医生更有可能讨论唐氏综合征的负面方面 (45%),而不是积极方面.
结论:
- 尽管有干预措施,但近二十年来,产后护理和对唐氏综合征诊断的支持质量并没有得到改善.
- 提供者行为,包括讨论积极方面和提供全面材料,对于减少父母的恐惧和焦虑至关重要.
- 改革建议侧重于改善唐氏综合征诊断披露期间的沟通和信息提供.
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