...
  • 主题
高级搜索  >
历史搜索 清空历史
首页> 外文期刊>Pediatrics: Official Publication of the American Academy of Pediatrics >Parents' experiences of expanded newborn screening evaluations.
【24h】

Parents' experiences of expanded newborn screening evaluations.

机译：父母扩大新生儿筛查评估的经验。

获取原文
获取原文并翻译 | 示例
           
页面导航
  • 摘要
  • 著录项
  • 相似文献
  • 相关主题

摘要

OBJECTIVE: Abnormal results of newborn screening for common metabolic diseases are known to create substantial distress for parents. We explored parents' perceptions during diagnostic evaluations for newer disorders that are less well understood. METHODS: Thirty families completed 48 open-ended interviews before and/or after parents received confirmatory test results for their infants. Qualitative content analysis was used to analyze the data. RESULTS: Parents were shocked by the notification of the abnormal test result. Their urgent and often frustrating searches for information dominated the early phase of the screening process. Treatment center personnel were mainly informative and reassuring, but waiting for results exacerbated parents' distress. Equivocal results from diagnostic testing created uncertainties for parents regarding their infants' long-term health. After counseling, some parents reported inaccurate ideas about the disorders despite exposure to large amounts of information. Regardless of the challenges and anxieties of the evaluation, nearly every parent thought newborn screening was an important program for infant health. CONCLUSIONS: The evaluation of a newborn for an abnormal screening result was highly stressful for parents. To help reduce parents' distress, improvements in communications and clinical services are needed. Recommendations of useful Internet sites and discussions of this information may benefit parents. Tailoring counseling to meet the needs of culturally and educationally diverse families is needed. Families and infants with equivocal results are a new group of patients who merit comprehensive clinical follow-up.
机译：目的：新生儿筛查常见代谢性疾病的异常结果已知会给父母带来极大的困扰。我们在诊断评估中探索了父母对新病的认识，这些新病尚不为人所知。方法：30个家庭在父母接受婴儿确认测试结果之前和/或之后完成了48个开放式访谈。定性内容分析用于分析数据。结果：家长对异常检查结果的通知感到震惊。他们对信息的紧迫且常常令人沮丧的搜索主导了筛选过程的早期阶段。治疗中心的工作人员主要是提供信息并让人放心，但等待结果加剧了父母的痛苦。诊断测试的模棱两可的结果给父母带来了关于婴儿长期健康的不确定性。经过咨询，尽管有大量的信息暴露，一些父母还是报告了有关疾病的不正确想法。无论评估的挑战和焦虑如何，几乎每个父母都认为新生儿筛查是婴儿健康的重要计划。结论：对新生儿筛查结果异常的评估对父母来说压力很大。为了减少父母的痛苦，需要改善沟通和临床服务。有用的互联网站点的建议和对此信息的讨论可能会使父母受益。需要量身定制咨询服务，以满足文化和教育背景各异的家庭的需求。效果不明确的家庭和婴儿是一组值得进行全面临床随访的患者。

著录项

相似文献

  • 外文文献
  • 中文文献
  • 专利
获取原文

客服邮箱：kefu@zhangqiaokeyan.com

京公网安备：11010802029741号 ICP备案号：京ICP备15016152号-6 六维联合信息科技 (北京) 有限公司©版权所有

  • 客服微信

  • 服务号