Mothers of children with Down syndrome reflect on their postnatal support
Mothers of children with Down syndrome reflect on their postnatal support
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DOI：
10.1542/peds.2004-0928
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发表时间：
2005-01-01
期刊：
影响因子：
8
通讯作者：
Skotko, B
中科院分区：
文献类型：
--
作者：
Skotko, B
客观的。自 1964 年以来，研究人员一直在研究医生对唐氏综合症 (DS) 进行产后诊断的方法。然而，几乎所有的研究都仅限于反思或非常小的样本量。本研究的目的是以最有力、最全面的方式记录美国母亲为孩子诊断出 DS 的感受。方法。一份 11 页的调查问卷已邮寄给 5 个 DS 上级组织的会员名单上的 2945 人。该调查收集了定量和定性数据，包括是/否问题、开放式问题以及一系列要求母亲们按照李克特量表（1 到 7）评价她们同意程度的陈述。结果。在 1250 份回复 (42.4%) 中，985 份来自于其孩子接受产后 DS 诊断的母亲。大多数母亲在得知诊断结果后表示感到害怕或焦虑，很少有人认为整体经历是积极的。母亲们报告说，她们的医生很少谈论 DS 的积极方面，也很少提供足够的最新印刷材料或其他患有 DS 孩子的父母的电话号码。随着时间的推移，虽然进展缓慢，但已经取得了进步。结论。母亲们呼吁医生改进产后诊断的方式。提供了具体建议。
Objective. Since 1964, researchers have been examining the ways in which physicians deliver a postnatal diagnosis of Down syndrome (DS). Almost all of the studies, however, have been limited to reflections or very small sample sizes. The objective of this study was to document, in the most robust comprehensive way, the reflections of mothers in the United States who received diagnoses of DS for their children.Methods. An 11-page survey was mailed to 2945 persons on the membership lists of 5 DS parent organizations. The survey gathered both quantitative and qualitative data with yes/no questions, open-ended questions, and a series of statements asking the mothers to rate their level of agreement on a Likert scale of 1 to 7.Results. Of the 1250 responses (42.4%), 985 were from mothers who received postnatal diagnoses of DS for their children. The majority of these mothers reported being frightened or anxious after learning the diagnosis, and very few rated the overall experience as a positive one. Mothers reported that their physicians talked little about the positive aspects of DS and rarely provided enough up-to-date printed materials or telephone numbers of other parents with children with DS. Improvement has been made with time, albeit slowly.Conclusion. Mothers have called on physicians to improve the way in which postnatal diagnoses are delivered. Specific recommendations are offered.