Center for End-of-Life Transition Research (CEoLTR)

描述（由申请人提供）：生命末期过渡研究中心的总体目的是推进对整个生命周期面临生命末期过渡的人的护理科学（例如，婴儿出生死亡，儿童，成人和老年人）。我们将强调以病人为中心，以家庭为中心的尊重死亡，规划与病人和家庭的价值观和优先事项一致的临终关怀（例如，对人们死亡方式的认识和提前的护理计划）和预期的死亡经历（例如，临终关怀、临终关怀和丧亲之痛）。本中心申请的具体目标是：（1）推进与生命末期过渡相关的护理科学;（2）加强质量和数量的道德使用中心研究者/附属机构的（混合方法）方法，并培训新手关于生命结束研究中的伦理问题和生物行为的混合方法测量（生物、行为和经验）变量、数据管理和数据分析;（3）利用有助于高度完整性流程和高效、有效、在机构和社区环境中获得可靠的结果;以及（4）促进向科学和临床界以及公众传播生命终结研究结果。通过该中心的活动，我们将推进临终关怀差异的科学，并通过为研究人员提供核心服务和资源来支持这一领域的研究培训。科学重点是根据一个基于生态的、与健康有关的生活质量框架在概念上进行组织的，该框架涉及人和环境因素，因为它们相互作用，影响个人和家庭体面死亡的结果。由该中心支持的研究将被设计为：（一）阐明潜在的生理，经验和行为机制，间接或影响接近死亡或丧亲之痛;和（B）测试文化相关的干预措施，死亡意识和尊重死亡。由该中心支持的研究将有一个生物行为的方向，并将包括结束生命护理的概念，测量生理（生物功能），经验（症状，感知健康，生活质量），和行为（功能状态）。具有不同学科专业知识的研究人员的互动将推动临终关怀科学朝着新的方向发展。 中心作为一个整体，包括行政核心和评价中心

DESCRIPTION (provided by applicant): The overall purpose of the Center for End-of-Life Transition Research is to advance the science of care for people facing the end-of-life transition across the life span (e.g., babies born dying, children, adults, and older adults). We will emphasize patient-centered, family-focused respectful death with planning for end-of life care that is consistent with the patients' and families' values and priorities (e.g., awareness about ways people die and advance care planning) and expected death experiences (e.g., palliative care, approaching dying, and bereavement). The specific aims of this Center application are to: (1) advance nursing science related to the end-of-life transition; (2) strengthen the ethical use of qualitative and quantitative (mixed methods) methodologies by Center investigators/affiliates and train novices regarding the ethical issues in end of life research and mixed methods measurement of biobehavioral (biological, behavioral, and experiential) variables, management of data, and analysis of data; (3) expand the capacity to conduct end of-life research with informatics solutions that contribute to high integrity processes and efficient, valid, and reliable outcomes in institutional and community-based settings; and (4) facilitate the dissemination of end of-life research findings to the scientific and clinical communities and to the general public. Through the Center activities, we will advance the science of disparities in care at end-of-Iife and support research training in this area by providing core services and resources to investigators. The scientific focus is conceptually organized according to an ecologically based, health-related quality of life framework that addresses both person and environmental factors as they interact to affect respectful death outcomes for individuals and families. Studies supported by the Center will be designed to: (a) elucidate underlying physiological, experiential, and behavioral mechanisms that prognosticate or influence approaching death or bereavement; and (b) test culturally relevant interventions for death awareness and respectful death. The research supported by the Center will have a biobehavioral orientation and will include end-of life-care concepts that are measured physiologically (biologic function), experientially (symptoms, perceived health, quality of life), and behaviorally (functional status). The interaction of investigators with expertise in diverse groups of subjects will move the science of end-of-life care forward in new directions. CENTER AS A WHOLE, INCLUDING ADMINISTRATIVE CORE AND EVALUATION PLAN