Toward Optimal End-of-Life Care in the PICU

在 PICU 中实现最佳的临终关怀

• 批准号: 6969216
• 负责人: Robert Truog
• 金额: $ 56.33万
• 依托单位: EDUCATION DEVELOPMENT CENTER, INC.
• 依托单位国家: 美国
• 财政年份: 2005
• 资助国家: 美国
• 起止时间: 2005-09-21 至 2009-06-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/6969216
• 关键词: abstracting; allied health personnel; behavioral /social science research tag; bereavement; clinical research; data collection methodology /evaluation; family medicine; focus groups; health care quality; health care service evaluation; health services research tag; human subject; infant mortality; interview; medical records; neonatal intensive care; patient care management; patient care personnel relations; social psychology; terminal patient care

DESCRIPTION (provided by applicant): Over the last decade, there has been a concerted effort to improve care at the end of life, but the vast majority of these efforts have focused on the care of adults. However, a landmark report, issued by the Institute of Medicine, has called for national attention to pediatric palliative care. In particular, the IOM has noted that "systematic data are not available" and called for research, particularly "descriptive data - epidemiological, clinical, organizational and financial - to guide the provision, funding and evaluation of palliative, end-of-life, and bereavement care for children and families (IOM, 2003, p. 17)." Most children in the United States who die do so in hospitals (Feudtner, 2002; IOM, 2003), and newly emerging data indicate that over 80% of those deaths occur within pediatric intensive care units (PICUs), (Watson et al., 2003). Therefore, this multi-institutional study will take place in PICUs in 6 geographically and demographically diverse children's hospitals. 50 consecutive deaths in the PICUs of these 6 institutions (n = 300) will be followed through medical record abstraction and telephone interviews conducted with the most important stakeholders - the child's parents, the child's primary nurse, the nurse who was present at the bedside at the child's death, the attending intensivist who directed the child's care, and a clinician besides the physicians and the nurses who provided psychosocial support to the family (e.g., social worker, psychologist, child life specialist or chaplain). The goal is to describe the nature and range of current practices, assess quality of care, develop the first research tool capable of measuring quality of dying and death in the PICU, and examine associations of structure and processes of care with both quality of end-of-life care and quality of dying and death, 2 constructs that have been inadequately distinguished in prior research (George, 2002). The project will yield new knowledge of 2 distinct types: (1) a series of papers on the organizational, epidemiological, and clinical characteristics of care as well as the quality of care and the quality of dying and death, based on aggregate data from all 6 institutions; (2) methodological papers that are responsive to current calls for the development of new tools and strategies for handling vexing challenges in end-of-life care research.

描述（由申请人提供）：在过去的十年中，在生命的尽头做出了一致的努力，但是这些努力的绝大多数都集中在成年人的护理上。但是，医学研究所发表的具有里程碑意义的报告呼吁全国关注小儿姑息治疗。特别是，IOM注意到“系统数据不可用”，并被要求进行研究，尤其是“描述性数据 - 流行病学，临床，组织和财务 - 指导对儿童和家庭的姑息性，临终关怀和丧生，居住和丧亲护理的提供，资金和评估（IOM，2003年，2003年，第17页）。”美国大多数死亡的儿童在医院中这样做（Furudtner，2002; IOM，2003年），新出现的数据表明，这些死亡中有80％以上发生在儿科重症监护病房中（PICUS）（PICUS），（Watson等，2003）。因此，这项多机构研究将在PICUS中进行6个地理和人口统计学多样化的儿童医院。这6个机构（n = 300）的Picus中有50例死亡将通过医疗记录抽象和电话采访和最重要的利益相关者进行的访谈 - 孩子的父母，孩子的主要护士，在孩子去世的床边，在孩子去世的床边，他们的临床医生和一名临床医生的临床医生以及对临床医生的教育者以及对人的身材进行了护理，并（例如，社会工作者，心理学家，儿童生活专家或牧师）。目的是描述当前实践的性质和范围，评估护理质量，开发第一个能够衡量PICU中垂死和死亡质量的研究工具，并研究结构和护理过程与终止终止护理的质量以及垂死和死亡质量的关联，两种在先前的研究中已经很杰出的结构（George，2002）。该项目将产生两种不同类型的新知识：（1）基于所有6个机构的汇总数据，有关护理的组织，流行病学和临床特征以及护理质量以及垂死和死亡质量的一系列论文； （2）响应当前呼吁开发新工具和策略来应对临终护理研究中的烦恼挑战的方法论论文。