Tluczek Audrey, Orland Kate Murphy, Nick Sara Wolfgram, Brown Roger L
School of Nursing, University of Wisconsin, Madison, WI 53792, USA.
J Perinat Neonatal Nurs. 2009 Oct-Dec;23(4):326-34. doi: 10.1097/JPN.0b013e3181a1bc1f.
The purpose of this study, which was part of a larger investigation of newborn screening (NBS) for cystic fibrosis (CF), was to learn how parents were informed about NBS and obtain their suggestions for improving the process of educating parents about NBS.
Qualitative study using directed and summative content analyses was conducted on 100 interviews with 193 parents of 100 newborns recruited from 4 clinical populations including parents of infants with (1) a CF diagnosis, (2) one CF mutation and therefore CF carriers, (3) congenital hypothyroidism, and (4) normal screening results.
Parents described much inconsistency in the timing of and methods used to inform them about NBS. Mothers with higher income were 3.69 times more likely to receive information before their infants' births than mothers with lower income. Parents recommended improving verbal and written communication with parents about NBS at multiple junctures from preconception to the infant's first few days of life. Parents suggested that providers take time to explain the purpose and importance of NBS, which diseases are included in testing, and when parents can expect results.
These findings suggest a need to establish evidence-based guidelines for informing parents about NBS.
本研究是对囊性纤维化（CF）新生儿筛查（NBS）进行的一项更大规模调查的一部分，旨在了解父母是如何得知新生儿筛查的，并获取他们对于改进向父母宣传新生儿筛查过程的建议。
采用定向和总结性内容分析法进行定性研究，对从4个临床群体招募的100名新生儿的193名父母进行了100次访谈，这些临床群体包括：（1）患有CF诊断的婴儿的父母；（2）携带一个CF突变因而为CF携带者的父母；（3）先天性甲状腺功能减退症患儿的父母；（4）筛查结果正常的父母。
父母们表示，在告知他们新生儿筛查的时间和方式上存在很大不一致。收入较高的母亲在婴儿出生前收到信息的可能性是收入较低母亲的3.69倍。父母们建议在从孕前到婴儿出生后最初几天的多个阶段，改善与父母关于新生儿筛查的口头和书面沟通。父母们建议医护人员花时间解释新生儿筛查的目的和重要性、检测包括哪些疾病以及父母何时可以期待结果。
这些发现表明需要建立基于证据的指南，以便向父母告知新生儿筛查相关信息。
