Parent Education about Newborn Screening and Bloodspot Retention

项目描述（由申请人提供）：本项目旨在探讨一般新生儿筛查和具体血斑样本保留的产前教育的内容、时间、效果和影响。本项目有以下具体目标：具体目标1)确定孕妇、年轻母亲及其伴侣想要了解残留血斑样本的保留和使用。方法包括在五个州（NY， CA， UT， MN， WA）进行的15个焦点小组。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NBS的基本信息以及通过具体目标1确定的关于剩余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。具体目标3)确定产前教育工具对父母关于国家统计局服务的知识、态度和决策的影响，以及剩余样本的保留和使用。3 a。为了确定对NBS知识和态度的影响以及剩余样本的保留，将对妊娠30 - 36周的妇女进行产前环境教育干预。1. 干预组A将在单独的产前检查中接受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样本保留和使用的教育），而B组将在一次检查中接受这两个主题的教育。2. 对照组将收到提供给产科和/或新生儿托儿所环境中新父母的标准信息。参与者将在分娩后3 - 6周接受调查，了解他们对NBS和样本保留和使用的知识和态度。一部分伴侣（N=150）将在分娩后3 - 6周接受调查，了解他们的知识和态度3b。为了确定干预对家长关于国家统计局服务和样本保留许可的决定的影响，将比较干预组与对照组在选择不保留和使用国家统计局剩余样本以及完全拒绝国家统计局的决定方面的影响。具体目标4)检查sa1和SA3结果对国家国家统计局计划实施的规范/伦理影响。就家长NBS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.