"这对我们的未来意味着什么?"母亲在讲述其唐氏综合症患儿的诊断和出生时的不确定性管理。

IF 2.9 3区 综合性期刊 Q1 MULTIDISCIPLINARY SCIENCES PLoS ONE Pub Date : 2024-11-06 eCollection Date: 2024-01-01 DOI:10.1371/journal.pone.0313195
Xavier Scruggs, Shannon Dier, Caleb A Schlaupitz, Katherine A Karayianis, Angela F Lukowski, Jennifer G Bohanek
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引用次数: 0

摘要

怀孕和分娩是一种不确定的经历,当父母收到孩子意外的医学诊断结果时,这种经历就变得更加不确定。在本研究中,我们记录了 44 位母亲关于其患有唐氏综合症(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,这些变异性与母亲的孩子是在产前还是产后被诊断出患有唐氏综合症有关。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:在诊断过程中引导父母与医疗服务提供者之间的不和谐、管理向他人披露诊断结果、预测以儿童为中心的挑战并调整发展预期,以及预测以家庭为中心的挑战并调整家庭预期。分析还揭示了处理不确定性的四种方法:在诊断过程中找到父母与服务提供者之间的平衡、通过寻求信息减少知识差距、寻求支持并建立积极的人际关系,以及在 DS 社区寻求支持并建立积极的关系。这些发现以及根据母亲是在产前还是产后被诊断为 DS 的潜在细微差别,对医疗服务提供者和医疗专业人员如何以最佳方式向家庭传达 DS 诊断结果,从而理解并最终减少他们所经历的不确定性具有重要意义。
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"What does this mean for our future?" uncertainty management in mothers' narratives about the diagnosis and birth of their child with Down syndrome.

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.

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来源期刊
PLoS ONE
PLoS ONE 生物-生物学
CiteScore
6.20
自引率
5.40%
发文量
14242
审稿时长
3.7 months
期刊介绍: PLOS ONE is an international, peer-reviewed, open-access, online publication. PLOS ONE welcomes reports on primary research from any scientific discipline. It provides: * Open-access—freely accessible online, authors retain copyright * Fast publication times * Peer review by expert, practicing researchers * Post-publication tools to indicate quality and impact * Community-based dialogue on articles * Worldwide media coverage
期刊最新文献
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