Care Preferences and Life Priorities of PWAs near Death

描述（由申请人提供）：即使在“高效抗逆转录病毒治疗”的时代，艾滋病仍然是许多成年人群发病和死亡的重要原因，对姑息治疗和临终关怀问题的关注仍然是临床护理的一个重要方面。人们对艾滋病毒感染者在接近生命终点时的生活优先事项以及这在多大程度上影响他们的目标和对保健的偏好知之甚少。有限的实证研究集中在了解临终病人的偏好，他们的家人的意识和接受他们的愿望，以及这些偏好表达的背景。具体而言，人们对死于艾滋病毒的患者面临的特殊护理优先事项和生活质量问题知之甚少。这些问题在非洲裔美国人和拉丁美洲人中尤其重要，因为他们受艾滋病毒/艾滋病的影响特别大。这项调查正在解决这一严重不足的领域。这项研究的总体目标是获得探索性的描述性信息，这些信息将告知知识库中的这些关键空白，并为艾滋病毒患者在生命结束时的临床管理提供见解。具体目标是：（1）探讨晚期HIV/AIDS患者在接近生命末期时对疾病的理解和看法;（2）探讨晚期HIV/AIDS患者在接近生命末期时的优先事项;（3）获得可用于加强临终患者与其家庭照顾者之间沟通的见解;（4）获得可用于加强临终病人、其家庭照顾者和卫生保健提供者之间沟通的见解;及（5）检查患者死亡的情况与患者和家庭照顾者在临终时表达的生活和护理目标的关系。生活为了实现研究目标，我们计划进行密集的，深入的，采访144人与先进的艾滋病毒/艾滋病及其家庭照顾者。患者和他们的家庭照顾者将分别参加两个单独的，面对面的研究会议与临床研究人员。如果患者在随访期内死亡，还将与家庭护理者进行死亡后访谈。抽样的种族和族裔分布情况将反映艾滋病毒/艾滋病对少数群体人口造成的严重影响。

DESCRIPTION (provided by applicant): Even in the era of 'highly active antiretroviral therapy', AIDS remains an important cause of morbidity and mortality in many adult populations and attention to palliative and end-of-life issues is still an essential aspect of clinical care. Little is known about HIV-infected individuals' life priorities as they approach the end-of-life and the extent to which this influences their goals and preferences for health care. Limited empirical research has focused on understanding the preferences of dying patients, their family's awareness and acceptance of their wishes, and the context in which these preferences are expressed. Specifically, little is known of the particular care priorities and quality of life issues facing patients dying of HIV. These issues are particularly important to investigate in African-American and Latino populations, which are disproportionately affected by HIV/AIDS. This investigation is addressing this critically under-explored area. The study's overall objective is to obtain exploratory, descriptive information that will inform these critical gaps in the knowledge base and provide insights for clinical management of HIV patients at the end of life. The specific aims are: (1) To explore the understanding and perceptions about illness of patients with advanced HIV/AIDS as they approach end-of-life; (2) To explore the priorities of individuals with advanced HIV/AIDS as they approach end-of-life; (3) To obtain insights that can be used to enhance communication between dying patients and their familial caregivers; (4) To obtain insights that can be used to enhance communication among dying patients, their familial caregivers and health care providers; and (5) To examine the circumstances of patients' deaths in relationship to the expressed patient and familial caregiver life and care goals at end-of-life. To accomplish the study objectives, we plan to conduct intensive, in-depth, interviews with 144 persons with advanced HIV/AIDS and their familial caregiver. Patients and their familial caregiver will each participate in two individual, face-to-face research meetings with a clinician researcher. A post-death interview will also be conducted with the familial caregiver if the patient dies within the follow-up period. The racial and ethnic distribution of the sample will reflect the heavy toll of HIV/AIDS on minority populations.