Care Preferences and Life Priorities of PWAs near Death

描述(申请人提供)：即使在‘高效抗逆转录病毒疗法’的时代，艾滋病仍然是许多成年人发病和死亡的重要原因，对姑息和临终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生命中的优先事项知之甚少，因为他们即将走到生命的尽头，以及这会在多大程度上影响他们的目标和对医疗保健的偏好。有限的实证研究侧重于了解临终病人的偏好、他们的家人对他们的意愿的认识和接受程度，以及这些偏好表达的背景。具体地说，人们对艾滋病毒死亡患者面临的特殊护理优先事项和生活质量问题知之甚少。在非洲裔美国人和拉美裔人口中调查这些问题尤为重要，因为他们受到艾滋病毒/艾滋病的影响不成比例。这项调查正在解决这一严重勘探不足的地区。这项研究的总体目标是获得探索性、描述性信息，这些信息将为知识库中的这些关键空白提供信息，并为艾滋病毒患者在生命末期的临床管理提供见解。具体目标是：(1)探索晚期艾滋病毒/艾滋病患者在临终时对疾病的理解和看法；(2)探索晚期艾滋病毒/艾滋病患者在临终时的优先事项；(3)获得可用于加强临终患者与其家庭照顾者之间的沟通的见解；(4)获得可用于加强临终患者、其家庭照顾者和卫生保健人员之间的沟通的见解；以及(5)检查患者的死亡情况与所表达的患者和家庭照顾者的生命和临终关怀目标之间的关系。为了实现研究目标，我们计划对144名晚期艾滋病毒/艾滋病患者及其家庭照顾者进行密集、深入的访谈。患者和他们的家庭照顾者将各自参加两次与临床医生研究人员面对面的个人研究会议。如果患者在随访期内死亡，还将与家属照顾者进行死后面谈。样本的种族和族裔分布将反映艾滋病毒/艾滋病对少数群体造成的沉重损失。

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.