DYING AT HOME OF AIDS & CANCER: PREFERENCES & OUTCOMES

描述(申请人提供)：改善身体舒适性和 临终病人的情感和精神福祉已成为全国性的 关注个别病人、健康专业人员和家庭成员 提供关怀，以及必须决定如何为 临终关怀。数据显示，患者？有关类型和站点的首选项 临终关怀的情况往往与实际发生的情况不同。关于这方面的研究 分歧主要集中在结构性因素上，如获得 医院床位和家庭护理资金。对病人和病人的了解很少 照顾者的特征，有助于 偏好和结果，或者减少或支持患者和照顾者 临终关怀期间的健康状况。这份修订后的申请书已作为 研究人员发起的互动研究项目拨款，提出了一个 初步研究以确定进行全面研究的可行性 解释偏好和结果在类型和地点上的差异 临终关怀，以及病人和照顾者的幸福。全面研究 将在随后提出。这项研究的重点是艾滋病患者和 癌症，住在家中学习进入，他们的主要家庭照顾者。 这项初步研究将确定：a)确定 生命还剩约3至6个月的绝症患者，b)招募 绝症患者及其主要家庭照顾者，以及c)保留 临终病人/照顾者一直到病人死亡或6岁。 月份。初步研究也将用于完善评估 议定书，包括自原议定书以来增加的结构变量的措施 呈件。这项初步研究将跟踪44对(总共88对) 哥伦比亚/纽约的绝症患者和他们的主要家庭照顾者 精神病学研究所和加州大学旧金山分校。数据 在初步研究中收集的数据将用于全面研究。

DESCRIPTION (provided by applicant): Improving the physical comfort and emotional and spiritual well-being of dying patients has become a national concern to individual patients, health professionals and family members who provide care, and policy makers who must decide how to allocate resources for end of life care. Data show that patients? preferences regarding type and site of terminal care often differ from what actually happens. Research on this discrepancy has focused primarily on structural factors such as access to hospital beds and funds for home care. Little is known about patient and caregiver characteristics that contribute to the degree of congruence between preferences and outcomes, or that diminishes or sustains patient and caregiver well being during terminal care. This revised application, submitted as an Investigator-initiated Interactive Research Project Grant, proposes a preliminary study to determine the feasibility of conducting a full-scale study to explain discrepancies between preferences and outcomes in type and site of end of life care, and patient and caregiver well-being. The full-scale study will be proposed subsequently. The research focuses on patients with AIDS and cancer, living at home at study entry, and their primary family caregivers. This preliminary study will determine the feasibility of: a) identifying terminally ill patients with approximately 3 to 6 months to live, b) recruiting terminally ill patients and their primary family caregiver, and c) retaining terminally ill patient/caregiver dyads until the patient dies or through six months. The preliminary study will also be used to refine the assessment protocol, including measures of structural variables added since the original submission. This preliminary study will follow 44 dyads (88 dyads total) of terminally ill patients and their primary family caregiver at Columbia/NY Psychiatric Institute and the University of California San Francisco. The data collected in the preliminary study will be used in the full-scale study.