Parent Education about Newborn Screening and Bloodspot Retention

描述（由申请人提供）：本项目的目的是解决内容，时间，有效性和产前教育的新生儿筛查一般和具体的血斑样本保留的影响。该项目有以下具体目标：具体目标1）确定孕妇、年轻母亲及其伴侣想知道关于残留血斑样本的保留和使用的内容。方法包括在五个州（纽约州、加利福尼亚州、犹他州、明尼苏达州、华盛顿州）进行的15个焦点小组。具体目标2）创建产前护理环境中使用的多媒体教育工具，提供关于国家统计局的基本信息以及通过具体目标1确定的关于残留样本保留和使用的核心信息。 具体目标3）确定产前教育工具对父母知识、态度和关于国家统计局服务的决定以及保留和使用剩余样本的影响。 3a.为了确定对NBS知识和态度的影响，将在产前环境中为妊娠30 - 36周的妇女提供教育干预。 1.干预组A将在单独的产前访视中接受两个主题的教育（仅NBS教育和NBS教育加样本保留和使用教育），而B组将在单次访视中接受此教育。 2.对照组将接收在OB和/或新生儿托儿所环境中提供给新父母的标准信息。将在分娩后3 - 6周调查参与者对NBS以及样本保留和使用的知识和态度。 “将在分娩后3 - 6周对一部分伴侣（N=150）进行关于其知识和态度的调查3b。为了确定对父母关于NBS服务和允许样本保留的决定的影响，将在选择不保留和使用NBS剩余样本以及完全拒绝NBS的决定方面对干预组与对照组进行比较。 具体目标4）检查SA 1和SA 3的结果对国家NBS项目的规范/伦理影响。将制定关于父母NBS教育的内容和时间安排的建议。

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.