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母亲们对其患有唐氏综合征孩子的诊断及出生的反思:基于诊断时间的差异

Mothers' reflections on the diagnosis and birth of their child with Down syndrome: Variability based on the timing of the diagnosis.

作者信息

Lukowski Angela F, Bohanek Jennifer G

机构信息

Department of Psychological Science, University of California, Irvine, Irvine, California, USA.

Department of Psychological Sciences, University of Missouri, Columbia, Missouri, USA.

出版信息

J Genet Couns. 2025 Apr;34(2):e1946. doi: 10.1002/jgc4.1946. Epub 2024 Jul 11.

Abstract

Previous research has examined parents' reflections on their child's Down syndrome diagnosis based on whether the diagnosis was provided prenatally or after birth, revealing few significant differences; by comparison, few studies have examined parents' reflections on the birth of the child in relation to the timing of the diagnosis. This study was conducted to examine whether mothers differentially reported on and rated the diagnosis, birth, and most recent birthday of their child with DS based on when the diagnosis was provided. Forty-four American mothers of children with DS discussed the birth of their child, when they learned of their child's DS diagnosis, and their child's most recent birthday with a researcher. Participants also completed online questionnaires on which they rated the events and indicated how they felt about the events at the time of their occurrence and at the time of the study. The results revealed that participants who received a prenatal diagnosis of DS for their child reflected differently-and seemingly more positively-on their child's birth relative to participants who received a postnatal diagnosis. These differences were evident when considering participant ratings, emotion language used when discussing the events, and feeling states characterizing how participants felt about the events at the time of their occurrence and at the time of the study. Given these group differences, medical professionals should carefully consider the conditions under which they provide mothers with diagnostic information and support services after a child is born.

摘要

以往的研究考察了父母基于孩子的唐氏综合征诊断是在产前还是产后做出的,对诊断的反思,结果显示差异不大;相比之下,很少有研究考察父母对孩子出生与诊断时间的关系的反思。本研究旨在考察母亲们是否会根据孩子唐氏综合征诊断的时间,对孩子的诊断、出生以及最近的生日给出不同的描述和评价。44位患有唐氏综合征孩子的美国母亲与一位研究人员讨论了她们孩子的出生情况、得知孩子患有唐氏综合征诊断的时间以及孩子最近的生日。参与者还完成了在线问卷,在问卷中他们对这些事件进行了评分,并表明在事件发生时和研究时他们对这些事件的感受。结果显示,相比那些在孩子出生后才得到诊断的参与者,那些孩子在产前就被诊断出患有唐氏综合征的参与者对孩子出生的反思有所不同,而且似乎更为积极。当考虑参与者的评分、讨论这些事件时使用的情感语言以及描述参与者在事件发生时和研究时对这些事件感受的情绪状态时,这些差异很明显。鉴于这些群体差异,医疗专业人员应仔细考虑在孩子出生后向母亲提供诊断信息和支持服务的条件。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/f106/11907182/0f16fa1764db/JGC4-34-0-g001.jpg

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