ETHICS AND PARENT COLLABORATION IN NICU END OF LIFE CARE

本KO 1的长期目标是进一步发展研究者的伦理理论方向和研究技能，以改善极早产儿及其家人的临终关怀。 目前，人们对新生儿重症监护病房（NICU）中的最佳临终关怀知之甚少。 拟议的研究将检查目前的临终关怀的做法，并将使用家长专业合作的过程，以确定示范性的临终关怀。 在这项研究中检查的伦理问题包括父母参与婴儿的医疗保健，提供同情和人道的照顾的义务，并考虑极早产儿在新生儿重症监护室的治疗负担的必要性。研究培训活动将在4年的时间内进行，并围绕以下目标：（1）通过全国调查记录当前NICU临终关怀实践;（2）确定父母对极早产儿临终关怀的偏好;（3）在两个研究中心NICU建立父母专业合作小组，以制定和实施临终关怀指南;以及（4）评估指南实施后实践中的变化。 本计画设计结合临床伦理议题之定量与质性研究，并发展一个新生儿临终关怀之亲职合作与伦理理论应用模式。 导师将在整个拟议研究的所有阶段监督申请人。

The long-term objective of this KO1 is to further develop the investigator's ethics theoretical orientation and research skills to improve end-of-life care for extremely premature infants and their families. At present, very little is known about what represents optimal end-of-life care within the neonatal intensive care unit (NICU). The proposed study will examine current end-of-life care practices and will use a parent- professional collaborative process to define exemplary end-of-life care. The ethical concerns examined in this study include the imperative of parental involvement in the health care of their infants, the obligation to provide compassionate and humane care, and the consideration of burden of treatment for extremely premature infants in the NICU. Research training activities will be conducted over a 4-year period and are centered around objectives to: (1) document current NICU end-of-life care practices through a national survey; (2) determine parental preferences regarding end-of-life care for their extremely premature infants; (3) establish parent-professional collaborative groups at two research site NICUs to develop and implement end-of-life care guidelines; and (4) evaluate changes in practice following guideline implementation. This project design incorporates quantitative and qualitative study of clinical ethical issues and the development of a model of parent-professional collaboration and ethics theory application in neonatal end-of-life care. The mentor will supervise the applicant throughout all phases of the proposed study.