Improving the consent process for pregnant mothers at risk of preterm delivery

描述(由申请人提供)：候选人和环境：普拉森西亚博士是一位在新生儿伦理学方面颇有成就的研究人员。他的长期目标是成为一名独立的调查者，利用经验证据来改变、修改或支持规范性道德标准。他已经找到了这一方法的先驱导师，并在一流研究机构和临床环境的支持下，设计了一个职业发展计划，以增强他的研究技能和伦理专业知识。有了这些关键要素，他将唯一有资格实现他的目标。目的：建立高危儿护理中父母围产期决策的伦理模型，并建立改善父母决策的临床模型。研究设计：SA 1：制定基于证据的最佳利益标准(BIS)的批判性评估。SA 1.1：调查高危父母 确定他们想要什么关于提供长期护理的家庭影响的信息，这些信息将如何影响他们的决策，以及他们考虑这些影响是否合适？SA 1.2：通过纳入我们先前关于国际清算银行概念化的调查和SA1.1中收集的数据，为对国际清算银行的从经验和伦理上合理的批判性评估进行辩护。SA 2：开发、评估和传播一种数据驱动的、在伦理上合理的模式，对孕妇及其伴侣进行产前教育，了解早产对婴儿的影响。SA 2.1：为怀孕18-30周的孕妇和她们的伴侣制作一系列教育视频，描述胎儿发育的当前阶段，以及如果胎儿早产会发生什么。SA 2.2：通过事前和事后评估确定视频对父母知识的有效性。SA 2.3：通过干预后调查评估母亲对教育影响的满意度。SA 2.4：评估对22-26周早产患者的复苏或生命维持治疗(LST)决策的影响。SA 2.5：评估医生对22-34周出生婴儿的父母的教育影响以及对22-26周出生婴儿的复苏或LST决定的影响的满意度。未来RO1：SA3：我们的产前教育模式适用于非学术产科环境。未来RO1：SA 4：扩大视频对父母决策影响的研究。未来RO1：SA 5：该模型适用于已知先天畸形婴儿的父母。

DESCRIPTION (provided by applicant): Candidate and environment: Dr. Placencia is an accomplished investigator in neonatal ethics. His long term goal is to become an independent investigator who uses empiric evidence to change, modify, or support the normative ethical standards. He has identified a mentor who pioneered this approach, the support of a premiere research institute and clinical environment, and designed a career development program to augment his research skills and expertise in ethics. With these critical components, he will be uniquely qualified to achieve his goals. Objective: Develop an ethical model for parental perinatal decision making about the care of high-risk infants, and develop a clinical model by which parental decision making may be improved. Study Design: SA 1: Develop an evidence based critical appraisal of the Best Interests Standard (BIS). SA 1.1: Survey parents of high risk infants to determine what information they want regarding the familial impact of providing long term care, how such information would have shaped their decision-making, and whether it would have been appropriate for them to consider these effects? SA 1.2: Defend an empirically and ethically justified critical appraisal of the BIS by incorporating data gathered in our previou surveys on the conceptualization of the BIS and in SA1.1. SA 2: Develop, assess, and disseminate a data-driven, ethically justified model for prenatal education of pregnant women and their partners on the consequences to the infant of premature delivery. SA 2.1: Create of a series of educational videos for pregnant women at 18-30 weeks gestation and their partners, describing the current stage of fetal development and what to expect if the fetus delivers premature. SA 2.2: Determine the efficacy of the video on parental knowledge via pre- and post- assessments. SA 2.3: Assess maternal satisfaction with educational impact via post intervention survey. SA 2.4: Assess impact on decision making regarding resuscitation or life sustaining therapy (LST) amongst patients who deliver prematurely at 22-26 weeks. SA 2.5: Assess physicians' satisfaction with educational impact for parents of infants born between 22-34 weeks and impact on decisions regarding resuscitation or LST for infants born at 22-26 weeks. Future RO1: SA 3: Adaption of our model of prenatal education for non-academic obstetric settings. Future RO1: SA 4: Expand the study of the video's impact on parental decision making. Future RO1: SA 5: Adaption of the model for parents of infants with known congenital anomalies.