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

IF 1.9 4区 医学 Q3 GENETICS & HEREDITY Journal of Genetic Counseling Pub Date : 2024-07-11 DOI:10.1002/jgc4.1946
Angela F Lukowski, Jennifer G Bohanek
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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.

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母亲对唐氏综合症患儿的诊断和出生的反思:基于诊断时间的差异。
以往的研究根据诊断是在产前还是产后做出的,考察了父母对孩子唐氏综合症诊断的看法,结果显示几乎没有显著差异;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看法。本研究旨在探讨母亲是否会根据诊断提供的时间,对 DS 患儿的诊断、出生和最近生日进行不同的报告和评价。44 位美国 DS 患儿的母亲与研究人员讨论了她们孩子的出生、何时得知孩子的 DS 诊断以及孩子最近的生日。参与者还填写了在线问卷,在问卷上对事件进行评分,并指出她们在事件发生时和研究时对事件的感受。研究结果显示,与产后确诊的参与者相比,产前确诊孩子患有 DS 的参与者对孩子出生时的反应有所不同,而且似乎更为积极。在考虑参与者的评分、讨论事件时使用的情感语言以及参与者在事件发生时和研究时对事件的感受状态时,这些差异显而易见。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。
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来源期刊
Journal of Genetic Counseling
Journal of Genetic Counseling GENETICS & HEREDITY-
CiteScore
3.80
自引率
26.30%
发文量
113
审稿时长
6 months
期刊介绍: The Journal of Genetic Counseling (JOGC), published for the National Society of Genetic Counselors, is a timely, international forum addressing all aspects of the discipline and practice of genetic counseling. The journal focuses on the critical questions and problems that arise at the interface between rapidly advancing technological developments and the concerns of individuals and communities at genetic risk. The publication provides genetic counselors, other clinicians and health educators, laboratory geneticists, bioethicists, legal scholars, social scientists, and other researchers with a premier resource on genetic counseling topics in national, international, and cross-national contexts.
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