Parent Education about Newborn Screening and Bloodspot Retention

关于新生儿筛查和血斑保留的家长教育

• 批准号: 8164010
• 负责人: JEFFREY R. BOTKIN
• 金额: $ 56.21万
• 依托单位: UNIVERSITY OF UTAH
• 依托单位国家: 美国
• 财政年份: 2011
• 资助国家: 美国
• 起止时间: 2011-09-20 至 2015-06-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/8164010
• 关键词: Address; Adopted; Attitude; Authorization documentation; Child; Communities; Control Groups; Development; Education; Educational Intervention; Elements; Environment; Ethics; Focus Groups; Intervention; Knowledge; Lead; Methods; Multimedia; Neonatal Screening; Newborn Infant; Nurseries; Online Systems; Parenting Education; Parents; Participant; Population Heterogeneity; Pregnancy; Pregnant Women; Prenatal care; Printing; Recommendation; Research; Residual state; Resources; Risk; Sampling; Services; Specimen; Surveys; Time; Visit; Woman; Writing; authority; base; group intervention; movie; prenatal; programs; tool; young mother

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. PUBLIC HEALTH RELEVANCE: Project Narrative Our broad objective is to improve parental knowledge about newborn dried bloodspot screening and the use of residual specimens. We will address the content, timing, efficacy, and impact of prenatal education about newborn screening and sample retention. In this project, we will compare new mothers' and their partners' knowledge and attitudes about newborn screening and residual specimens following an educational intervention for the mothers with the knowledge and attitudes of mothers in a control group who receive information routinely provided in the nursery environment. We also will evaluate the rate and reason parents opt out of newborn screening and retention of the residuals samples.

描述（由申请人提供）：该项目的目的是解决产前教育对新生儿筛查的内容，时机，功效和影响，并专门保留血液点样本。该项目具有以下特定目的：具体目的1）确定有关孕妇，年轻母亲及其伴侣希望知道的关于保留和使用残留血液点样品方法的方法包括在五个州（NY，CA，UT，MN，MN，WA）进行的15个焦点小组。具体目的2）创建多媒体教育工具，以在产前护理环境中使用，该工具将提供有关NBS的基本信息以及通过特定目标确定的核心信息1关于残留样本保留和使用。 '方法包括开发最先进的视频，印刷材料和基于Web的工具特定目的3）确定产前教育工具对父母知识，态度和关于NBS服务的态度和决策的影响以及保留和使用残留样本。 3a。为了确定对NBS的知识和态度的影响，以及在妊娠30至36周内剩余样本的妇女的保留，将在产前环境中提供妊娠的教育干预措施。 1.干预组A将在单独的产前访问中提供有关两个主题（仅NBS教育以及NBS教育以及样本保留和使用的教育）的教育，而B组将在一次访问中接受此教育。 2。对照组将收到向OB和/或新生幼儿园环境中的新父母提供的标准信息，将在交货后3-6周接受有关他们对NBS以及样本保留和使用的知识和态度的调查。 '伙伴（n = 150）的一部分将在交货后3-6周对其知识和态度3B进行调查。为了确定对父母对NBS服务的决定的影响以及样本保留的许可“干预”与对照组的决定，将在选择退出NBS残留样本和完全拒绝NBS的决策方面进行比较。 特定目的4）检查SA 1和SA3结果对国家NBS计划的结果的规范/道德含义。关于父母NBS教育的内容和时机的建议。 公共卫生相关性：项目叙述我们的广泛目标是提高父母对新生的干血点筛查和使用剩余标本的知识。我们将解决产前教育对新生儿筛查和样本保留的内容，时机，功效和影响。在这个项目中，我们将比较新的母亲及其伴侣的知识和态度，并在对对照组的母亲的知识和态度进行教育干预之后，在对照组的知识和态度进行教育干预之后，在对照组中接受了在托儿所环境中经常提供的信息。我们还将评估父母选择退出新生儿筛查和保留残留样本的速度和原因。