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这对我们的未来意味着什么?——唐氏综合征患儿的母亲在诊断和生产过程中的叙事不确定性管理。

"What does this mean for our future?" uncertainty management in mothers' narratives about the diagnosis and birth of their child with Down syndrome.

机构信息

Department of Communication, University of Missouri, Columbia, Missouri, United States of America.

Department of Human Development and Family Science, University of Missouri, Columbia, Missouri, United States of America.

出版信息

PLoS One. 2024 Nov 6;19(11):e0313195. doi: 10.1371/journal.pone.0313195. eCollection 2024.

Abstract

Pregnancy and childbirth are uncertain experiences that become even more so when parents receive an unexpected medical diagnosis for their child. In the present study, we document sources of uncertainty and the tools used to manage uncertainty in 44 mothers' narratives about the birth and diagnosis of their child with Down syndrome (DS); we also explore variability in the sources of uncertainty and uncertainty management tools as a function of whether mothers received a prenatal or postnatal diagnosis of DS for their child. Across our sample, thematic analysis revealed four sources of uncertainty in mothers' narratives: navigating dissonance between parents and providers during diagnosis, managing disclosure of the diagnosis to others, anticipating child-centered challenges and adjusting developmental expectations, and anticipating family-centered challenges and adjusting familial expectations. Analyses also revealed four ways that uncertainty was managed: finding balance between parents and providers during diagnosis, reducing knowledge gaps by seeking information, pursuing support and building positive interpersonal relationships, and pursuing support and building positive relationships in DS communities. These findings, along with potential nuance based on whether mothers received a prenatal or postnatal diagnosis of DS for their child, have important implications for healthcare providers and medical professionals regarding how to best communicate DS diagnoses to families as a means of understanding and ultimately reducing the uncertainty they experience.

摘要

怀孕和分娩是不确定的经历,而当父母收到孩子意外的医疗诊断时,这种经历就更加不确定了。在本研究中,我们记录了 44 位母亲关于其患有唐氏综合征(Down syndrome,DS)的孩子的出生和诊断的叙述中的不确定性来源和用于管理不确定性的工具;我们还探讨了不确定性来源和不确定性管理工具的变异性,这取决于母亲是否为孩子接受了产前或产后的 DS 诊断。在我们的样本中,主题分析揭示了母亲叙述中的四个不确定性来源:在诊断过程中协调父母和提供者之间的不和谐,管理向他人披露诊断,预测以孩子为中心的挑战并调整发展期望,以及预测以家庭为中心的挑战并调整家庭期望。分析还揭示了管理不确定性的四种方法:在诊断过程中在父母和提供者之间找到平衡,通过寻求信息来缩小知识差距,寻求支持并建立积极的人际关系,以及在 DS 社区中寻求支持并建立积极的关系。这些发现,以及基于母亲是否为孩子接受了产前或产后的 DS 诊断的潜在细微差别,对于医疗保健提供者和医学专业人员具有重要意义,因为这是了解并最终减少他们所经历的不确定性的最佳途径。

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本文引用的文献

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Down syndrome: Parental experiences of a postnatal diagnosis.唐氏综合征:产后诊断的父母体验。
J Intellect Disabil. 2023 Dec;27(4):1032-1044. doi: 10.1177/17446295221106151. Epub 2022 Jun 14.
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Evaluating for disparities in prenatal genetic counseling.评估产前遗传咨询中的差异。
Am J Obstet Gynecol MFM. 2022 Jan;4(1):100494. doi: 10.1016/j.ajogmf.2021.100494. Epub 2021 Sep 25.
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Family Sense-Making After a Down Syndrome Diagnosis.唐氏综合征诊断后的家庭意义建构
Qual Health Res. 2020 Oct;30(12):1783-1797. doi: 10.1177/1049732320935836. Epub 2020 Jul 3.
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Down Syndrome.唐氏综合征
N Engl J Med. 2020 Jun 11;382(24):2344-2352. doi: 10.1056/NEJMra1706537.
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Receiving the news of Down syndrome in the era of prenatal testing.在产前检测时代得知唐氏综合征的消息。
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