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首页> 外文期刊>International Journal of Neonatal Screening >Indifferent or Uninformed? Reflections of Health Professionals on Parental Education and Consent for Expanded Newborn Screening in Israel, 2008?￠????2016
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Indifferent or Uninformed? Reflections of Health Professionals on Parental Education and Consent for Expanded Newborn Screening in Israel, 2008?￠????2016

机译：漠不关心还是无知？卫生专业人员对以色列父母教育和扩大新生儿筛查的同意的思考，2008年，2016年

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Background: This study explored the views of health professionals regarding parental education and informed consent for newborn screening (NBS) following the expansion of the NBS program in Israel. Methods: 24 in-depth interviews with 22 practitioners involved in NBS in Israel, and internationally, were conducted and analyzed qualitatively. Results and discussion: 1. Program creators, who were involved in the development, design, implementation, and delivery of the expanded NBS program, were concerned about the ?￠????indifferent?￠???? attitude of parents of newborns to NBS as opposed to their high awareness and utilization of prenatal screening. 2. Program creators evaluated program success by different standards of parental education and informed consent than did practitioners, who were involved solely or mostly in the delivery of NBS results. The latter were skeptical about the possibility of obtaining informed consent and expressed diverse views about desired levels of education and consent. Eight years later, parental indifference to NBS is still a major concern for program creators, but not for practitioners. Conclusions: Program creators, due to their role and direct responsibility, assess NBS as an independent, stand-alone process about which parents should be informed and educated. Therefore, they focus on the indifference of parents to NBS as a non-optimal achievement of one programmatic aspect. Practitioners, on the other hand, perceive the medical care of the newborn holistically, focusing on the overall well-being of the baby. Therefore, they would be satisfied if the best possible medical care is provided to the newborn, by screening, confirmatory diagnosis, and follow up, even if parents are less informed about the process.
机译：背景：本研究探讨了卫生专业人员在以色列扩大NBS计划后，对父母教育和新生儿筛查知情同意（NBS）的看法。方法：定性分析了以色列和国际上22位参与NBS的从业人员的24次深度访谈。结果与讨论：1.参与了扩展的NBS程序的开发，设计，实施和交付的程序创建者担心“无动于衷”。新生儿父母对NBS的态度与他们对产前筛查的高度了解和利用相对。 2.与单独或主要参与NBS结果交付的从业者相比，计划创建者通过不同的父母教育和知情同意标准评估了计划的成功。后者对获得知情同意的可能性表示怀疑，并对期望的教育和同意水平表达了不同的看法。八年后，父母对国家统计局的冷漠仍然是程序创作者的主要关切，但从业者却没有。结论：由于计划制定者的作用和直接责任，他们将国家统计局评估为一个独立的，独立的过程，应该向其告知和教育父母。因此，他们专注于父母对NBS的冷漠，这是一个程序方面的非最佳成就。另一方面，从业人员则从整体上对婴儿的健康状况进行整体护理。因此，即使父母对这一过程知之甚少，如果通过筛查，确诊和随访对新生儿提供最佳的医疗服务，他们也会感到满意。

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