ETHICS AND PARENT COLLABORATION IN NICU END OF LIFE CARE

这一KO1的长期目标是进一步发展研究人员的道德、理论取向和研究技能，以改善对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。拟议的研究将审查目前的临终关怀做法，并将使用父母-专业合作进程来界定模范临终关怀。这项研究审查的伦理关切包括父母参与婴儿保健的必要性，提供同情心和人道护理的义务，以及考虑NICU中极早产儿的治疗负担。为期4年的研究培训活动将围绕以下目标展开：(1)通过全国调查记录当前NICU的临终关怀做法；(2)确定父母对极早产儿临终关怀的偏好；(3)在两个研究地点NICU建立家长-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。该项目设计结合了对临床伦理问题的定量和定性研究，以及父母-专业合作模式的发展和伦理理论在新生儿临终关怀中的应用。导师将在拟议研究的所有阶段监督申请者。

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.