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

描述(由申请人提供)：临终过渡研究中心的总体目的是促进对面临临终过渡的人(如婴儿出生垂死、儿童、成人和老年人)的护理科学。我们将强调以患者为中心、以家庭为中心的尊崇死亡，并计划与患者和家庭的价值观和优先事项(例如，对人们死亡方式的认识和提前护理计划)和预期死亡经历(例如，姑息治疗、临终关怀和丧亲)相一致的临终关怀。该中心的具体应用是：(1)促进与临终转变相关的护理科学；(2)加强中心调查人员/附属机构对定性和定量(混合方法)方法的伦理使用，并就生命临终研究和生物行为(生物、行为和经验)变量的混合方法测量、数据管理和数据分析中的伦理问题培训新手；(3)利用信息学解决方案扩大进行临终研究的能力，这些解决方案有助于在机构和社区环境中进行高度完整的过程和高效、有效和可靠的结果；以及(4)促进向科学界和临床界以及公众传播临终研究成果。该中心支持的研究将旨在：(A)阐明预测或影响临近死亡或丧亲的潜在生理、经验和行为机制；(B)测试与死亡意识和尊重死亡相关的文化干预措施。该中心支持的研究将以生物行为为导向，并将包括从生理(生物功能)、经验(症状、感知健康、生活质量)和行为(功能状态)衡量的临终关怀概念。修订申请增加了护理和医疗保健 信息学核心通过增加多媒体数据分析、可视化和数据挖掘的能力，并从工程学院的教员那里获得大量额外的专业知识。

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 alms 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. 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 revision application adds to the Nursing and Healthcare Informatics Core by adding capacity for multimedia data analysis and visualization and data mining with substantial added expertise from faculty from the College of Engineering.