Department of Neurology and Center for Genetic Medicine Research, Children's National Medical Center, Washington, DC, USA.
Genet Med. 2012 Jan;14(1):76-80. doi: 10.1038/gim.2011.5.
Newborn screening leads to improved treatment and disease outcomes, but false-positive newborn screening results may cause distress for parents. The purpose of this study was to describe the experiences of families who receive a false-positive newborn screening result in an attempt to discover ways to help improve the newborn screening communication process for families.
This was a qualitative study using two methods of data collection: in-depth, semistructured interviews and focus groups. Participants (N = 27) were parents whose children (ages 6-16 months) underwent follow-up testing after newborn screening and whose follow-up test results indicated that the newborn screening result was a false-positive.
Our analysis found that parents who have a false-positive newborn screening result experience five distinct stages. Most parents did not report long-term negative impacts of the experience, but some experienced some residual worry. Participants described effective provider communication as key in mitigating stress. Some parents identified the experience as leading to positive outcomes.
Identifying best practices for communication between the health care providers and parents is an essential component in improving the newborn screening process. Further research is needed to discover best practices for communication to minimize potential harm and maximize the benefits of newborn screening.
新生儿筛查可改善治疗效果和疾病结局，但假阳性的新生儿筛查结果可能会给父母带来困扰。本研究旨在描述接受假阳性新生儿筛查结果的家庭的体验，以期找到改善家庭新生儿筛查沟通流程的方法。
这是一项使用两种数据收集方法的定性研究：深入的半结构化访谈和焦点小组。参与者（N=27）是其孩子（6-16 月龄）在新生儿筛查后进行了随访检测且检测结果表明新生儿筛查结果为假阳性的父母。
我们的分析发现，假阳性新生儿筛查结果的父母经历了五个不同的阶段。大多数父母并未报告该经历的长期负面影响，但一些父母仍存在一些残留的担忧。参与者表示，提供者的有效沟通是减轻压力的关键。一些父母将这一经历视为积极的结果。
确定医疗保健提供者与父母之间沟通的最佳实践是改善新生儿筛查流程的重要组成部分。需要进一步研究以确定沟通的最佳实践，以最大程度地减少潜在危害并最大程度地发挥新生儿筛查的益处。
