DYING AT HOME OF AIDS & CANCER: PREFERENCES & OUTCOMES

描述（由申请人提供）：改善身体舒适度， 临终病人的情感和精神健康已成为一个国家 关注个别病人，卫生专业人员和家庭成员， 政策制定者必须决定如何分配资源， 临终关怀数据显示，患者？关于类型和地点的偏好 临终关怀的结果往往与实际情况不同。调研了这个 差异主要集中在结构性因素，如获得 医院床位和家庭护理资金。对病人知之甚少， 照顾者的特点，有助于之间的一致性程度 偏好和结果，或减少或维持患者和护理人员 在临终关怀期间。这份修订后的申请，作为 研究者发起的互动研究项目补助金，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部位上的差异， 临终关怀，以及患者和护理人员的福祉。全面研究 随后将提出。这项研究的重点是艾滋病患者， 癌症，在研究开始时住在家里，以及他们的主要家庭照顾者。 这项初步研究将确定以下方面的可行性： 存活时间约为3 - 6个月的晚期疾病患者，B）招募 晚期病人及其主要家庭照顾者，以及c）保留 晚期病人/护理者二人组，直到病人死亡或通过六个 个月初步研究还将用于完善评估 方案，包括自原方案以来增加的结构变量的措施 成绩.这项初步研究将遵循44对（共88对） 在哥伦比亚/纽约的绝症患者及其主要家庭照顾者 精神病研究所和加州旧金山弗朗西斯科。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.