Parent Education about Newborn Screening and Bloodspot Retention

描述(由申请者提供)：本项目的目标是解决关于新生儿筛查和血斑样本保留的一般产前教育的内容、时间、效果和影响。该项目有以下具体目标：具体目标1)确定孕妇、年轻母亲及其伴侣在保留和使用残留血斑样本方面想知道什么，方法包括在五个州(纽约州、加利福尼亚州、德克萨斯州、明尼苏达州、华盛顿州)进行15个重点小组。具体目标2)创建用于产前护理环境的多媒体教育工具，提供关于国家统计局的基本信息和通过具体目标1确定的关于残留样本保留和使用的核心信息。‘方法包括开发最先进的视频、印刷材料和基于网络的工具，以确定产前教育工具对父母关于国家统计局服务和保留和使用剩余样本的知识、态度和决策的影响。3A.为了确定对国家BS知识和态度的影响以及对怀孕30-36周的妇女保留残留样本的影响，将在产前环境中进行教育干预。1.干预A组将在单独的产前检查中提供关于两个主题的教育(仅国家统计局教育和国家统计局教育加上关于样品保存和使用的教育)，而B组将在一次访问中接受这一教育。2.对照组将收到提供给OB和/或新生儿托儿所环境中的新父母的标准信息。参与者将在分娩后3-6周接受调查，了解他们对国家BS以及样品保留和使用的知识和态度。‘一组伴侣(N=150)将在分娩后3-6周接受关于其知识和态度的调查。为了确定对父母关于国家统计局服务和允许保留样本的决定的影响，将在决定不保留和使用国家统计局、剩余样本和拒绝国家统计局的决定方面，将干预组与对照组进行比较。具体目标4)审查SA1和SA3结果对国家统计局项目实施的规范/伦理影响。将就父母国家统计局教育的内容和时间提出建议。

DESCRIPTION (provided by applicant): The objective of this project is to address the content, timing, efficacy, and impact of prenatal education about newborn screening generally and bloodspot sample retention specifically. This project has the following specific aims: Specific Aim 1) To determine what pregnant women, young mothers, and their partners want to know regarding the retention and use of residual bloodspot samples ' Methods include 15 focus groups conducted in five states (NY, CA, UT, MN, WA). Specific Aim 2) To create multimedia educational tools to be used in the prenatal care environment that will provide basic information about NBS and the core information determined through Specific Aim 1 about residual sample retention and use. ' Methods include the development of state-of-the-art video, printed materials, and web-based tools Specific Aim 3) To determine the impact of the prenatal education tool on parental knowledge, attitudes, and decisions regarding NBS services and the retention and use of residual samples. 3a. To determine the impact on knowledge and attitudes about NBS and the retention of residual samples ' Women at 30 - 36 weeks gestation will be provided the educational interventions in the prenatal environment. 1. Intervention Group A will have education provided on the two topics (NBS education only and NBS education plus education on sample retention and use) at separate prenatal visits while Group B will receive this education at a single visit. 2. A control group will receive standard information that is provided to new parents in the OB and/or newborn nursery environments ' Participants will be surveyed at 3 - 6 weeks post delivery about their knowledge and attitudes about NBS and sample retention and use. ' A subset of partners (N=150) will be surveyed at 3 - 6 weeks post delivery regarding their knowledge and attitudes 3b. To determine the impact on parents' decisions regarding NBS services and the permission for sample retention ' Intervention versus control groups will be compared with respect to decisions to opt-out of the retention and use of NBS residual samples and refusals of NBS altogether. Specific Aim 4) To examine the normative/ethical implications of the results of SA 1 and SA3 for the conduct of state NBS programs. Recommendations on the content and timing of parental NBS education will be developed.