ETHICS AND PARENT COLLABORATION IN NICU END OF LIFE CARE

NICU 临终关怀中的道德规范和家长合作

• 批准号: 6392982
• 负责人: TANYA SUDIA-ROBINSON
• 金额: $ 8.81万
• 依托单位: EMORY UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2000
• 资助国家: 美国
• 起止时间: 2000-09-01 至 2004-05-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/6392982
• 关键词: behavioral /social science research tag; clinical research; ethics; human subject; neonatal intensive care; parents; patient care personnel relations; premature infant human; terminal patient care

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.

本KO1的长期目标是进一步发展研究者的伦理学理论取向和研究技能，以改善极早产儿及其家庭的临终关怀。目前，关于什么是新生儿重症监护病房（NICU）的最佳临终关怀知之甚少。提出的研究将检查当前临终关怀的做法，并将使用父母-专业合作的过程来定义示范性临终关怀。本研究考察的伦理问题包括父母参与婴儿医疗保健的必要性，提供富有同情心和人道关怀的义务，以及NICU极度早产儿治疗负担的考虑。研究培训活动将在4年期间进行，并围绕以下目标进行：(1)通过全国调查记录当前新生儿重症监护病房临终关怀实践；(2)确定父母对极早产儿临终关怀的偏好；(3)在两个研究点新生儿重症监护室建立亲子专业协作小组，制定和实施临终关怀指南；(4)评估指南实施后实践中的变化。本项目设计结合临床伦理问题的定量和定性研究，建立亲子专业合作模式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人。