Newcomb Patricia, True Barbara, Walsh Judith, Dyson Maynard, Lockwood Suzanne, Douglas Becky
Texas Health Resources, Fort Worth, Texas, USA. patriciaNewcomb@texashealth
MCN Am J Matern Child Nurs. 2013 Sep-Oct;38(5):289-94; quiz 295-6. doi: 10.1097/NMC.0b013e31829a55e2.
To determine whether mothers of newborns understand basic facts about newborn screening (NBS), and how they feel about state retention of dried bloodspots (DBS) for research use.
This study was a cross-sectional survey administered to 548 mothers of newborns in postpartum units in five different hospitals in north Texas after Institutional Review Board approval. Each participating site delivered and collected surveys using systems that were convenient for them. The survey instrument used in this study is the Maternal Attitudes and Knowledge about Newborn Screening Survey. The survey was developed by the investigators. Summary statistics were provided for each participating site and surveys were combined for final data analysis. Multiple regression analysis was used to quantify associations between responses and demographic variables.
Overall, knowledge about details of NBS and DBS retention was inadequate. The most frequent source of information about NBS was the postpartum nurse. Mothers tended to believe that using newborn bloodspots for research was a good thing, but Medicaid recipients and minorities were more reluctant than others to share dried bloodspots for research.
Mothers are not fully informed about NBS or the use of infant bloodspots for research. Bloodspot storage in Texas could shrink under new opt-in policies, constraining a resource needed for genetic and other research. Further research to design and test educational interventions that are sensitive to the concerns of parents about DBS storage and that can be efficiently implemented antenatally is needed.
确定新生儿母亲是否了解新生儿筛查（NBS）的基本情况，以及她们对留存干血斑（DBS）用于研究的态度。
本研究为横断面调查，经机构审查委员会批准后，对北德克萨斯州五家不同医院产后病房的548名新生儿母亲进行了调查。每个参与站点使用对其方便的系统发放和收集调查问卷。本研究使用的调查工具是《母亲对新生儿筛查的态度和知识调查问卷》，由研究人员编制。为每个参与站点提供了汇总统计数据，并将调查问卷汇总进行最终数据分析。采用多元回归分析来量化回答与人口统计学变量之间的关联。
总体而言，对NBS细节和留存DBS的了解不足。关于NBS最常见的信息来源是产后护士。母亲们倾向于认为将新生儿血斑用于研究是一件好事，但医疗补助接受者和少数族裔比其他人更不愿意分享干血斑用于研究。
母亲们对NBS或使用婴儿血斑进行研究的情况了解并不充分。在新的选择加入政策下，德克萨斯州的血斑储存量可能会减少，这将限制基因及其他研究所需的资源。需要进一步开展研究，设计并测试对父母关于DBS储存的担忧敏感且能在产前有效实施的教育干预措施。
