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一项关于唐氏综合征产前诊断后影响决策因素的定性研究。

A Qualitative Study of Factors Influencing Decision-Making after Prenatal Diagnosis of down Syndrome.

作者信息

Reed Amy R, Berrier Kathryn L

机构信息

Department of Writing Arts, Rowan University, 142 Bozorth Hall, Glassboro, NJ, 08028, USA.

Division of Medical Genetics, Duke University Medical Center, Durham, NC, USA.

出版信息

J Genet Couns. 2017 Aug;26(4):814-828. doi: 10.1007/s10897-016-0061-8. Epub 2016 Dec 29.

Abstract

Previous research has identified twenty-six factors that may affect pregnancy management decisions following prenatal diagnosis of DS; however, there is no consensus about the relative importance or effects of these factors. In order to better understand patient decision-making, we conducted expansive cognitive interviews with nine former patients who received a prenatal diagnosis of DS. Our results suggest that patients attached unique meanings to factors influencing decision-making regardless of the pregnancy outcome. Nineteen of the twenty-six factors previously studied and four novel factors (rationale for testing, information quality, pregnancy experience, and perception of parenting abilities and goals) were found to be important to decision-making. We argue that qualitative studies can help characterize the complexity of decision-making following prenatal diagnosis of DS.

摘要

先前的研究已经确定了26个可能影响唐氏综合征产前诊断后妊娠管理决策的因素;然而,对于这些因素的相对重要性或影响,尚未达成共识。为了更好地理解患者的决策过程,我们对9名接受过唐氏综合征产前诊断的既往患者进行了广泛的认知访谈。我们的结果表明,无论妊娠结局如何,患者对影响决策的因素都赋予了独特的意义。先前研究的26个因素中有19个以及4个新因素(检测理由、信息质量、妊娠经历以及对育儿能力和目标的认知)被发现对决策很重要。我们认为,定性研究有助于描述唐氏综合征产前诊断后决策过程的复杂性。

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