Hospice exposure and utilization among older African Americans with ADRD and their decisional support persons

项目摘要/摘要 阿尔茨海默病和相关痴呆症(ADRD)影响着全球约5000万[1]人， 非洲裔美国人面临着患这种限制生命的疾病的风险增加，其特征是最终 丧失认知能力和独立性。ADRD有一个不可预测的轨迹，制定生命终结计划 与初级家庭照顾者合作势在必行，包括考虑使用临终关怀服务。 尽管临终关怀有好处，但非裔美国人没有充分利用这些服务，往往选择接受 具有侵略性且代价高昂的临终治疗。非洲裔美国人也面临着更高的死亡风险 医院。在非裔美国人中使用临终关怀的障碍包括医疗不信任、缺乏知识和缺乏 病人的价值观和临终关怀哲学之间的一致性。然而，深入探索 临终关怀信息的来源和看法，特别是在ADRD患者中，已经获得 很少有人注意到。了解患有ADRD的老年非裔美国人和他们的 主要家庭照顾者通常充当决策支持人员，他们接受临终关怀信息以及如何接受 临终关怀暴露影响决策可能更好地为临终关怀决策对话提供信息。在这 探索性、定性研究，我们将对大约30名前 与ADRD一起生活的老年非裔美国人的家庭照顾者(1)确定来源和 临终关怀信息暴露的特征和(2)探讨临终关怀信息暴露的可信度和有效性 临终关怀信息及其对临终关怀决策过程的影响。原 家庭照顾者拥有丰富的经验，可以为临终关怀决策提供独特的视角- 制作过程。这些发现将为开发适合文化的工具来识别临终关怀提供参考 信息来源、决策和未来干预，以提高临终关怀利用率并减少 患有ADRD的老年非裔美国人的生活差异。拟议的研究和培训计划与 与国家护理研究所关于健康公平和社会决定因素的战略计划 健康。拟议的研究建立在申请者对健康不平等和差异、临终关怀 ADRD患者中非裔美国人的利用不足，以及定性方法。培训将重点放在 获得对临终关怀暴露及其贡献进行独立研究所需的技能 老年非裔美国ADRD患者及其主要家庭照顾者的临终关怀决策 和基于社区的研究，并促进对临终关怀差距和 临终关怀在这一人群中的使用情况。培训计划、奖学金共同发起人和研究团队专家将 为申请人的职业生涯做好准备，成为一名独立研究员，在以下方面进行严格的定性研究 非裔美国人的健康不平等和临终差异。

PROJECT SUMMARY/ABSTRACT Alzheimer’s disease and related dementias (ADRD) affect approximately 50 million [1] people worldwide, with African Americans facing an increased risk of developing this life-limiting disease characterized by the eventual loss of cognitive ability and independence. ADRD has an unpredictable trajectory, making end-of-life planning in conjunction with primary family caregivers imperative, including considering the use of hospice services. Despite the benefits of hospice, African Americans underutilize the services, often opting to undergo aggressive and costly end-of-life treatment. African Americans are also at increased risk of dying in the hospital. Barriers to hospice use in African Americans include medical mistrust, lack of knowledge, and lack of congruence between the patient’s values and the hospice philosophy. However, in-depth exploration of the sources of and perceptions about hospice information, especially among persons with ADRD, has garnered little attention. Understanding the sources from which older African Americans living with ADRD and their primary family caregivers, who often serve as decisional support persons, receive hospice information and how hospice exposure influences decision-making may better inform hospice decision-making conversations. In this exploratory, qualitative study, we will conduct in-depth semi-structured interviews with approximately 30 former family caregivers of older African Americans who lived with ADRD to (1) identify the sources and characteristics of hospice information exposure and (2) explore the perceived credibility and effectiveness of hospice information and the influence of the information on the hospice decision-making process. Former family caregivers have a wealth of experience and can provide a unique perspective on the hospice decision- making process. Findings will inform the development of culturally appropriate instruments to identify hospice information sources, decision-making, and future interventions to improve hospice utilization and reduce end- of-life disparities in older African Americans living with ADRD. The proposed research and training plan aligns with the National Institute of Nursing Research Strategic Plan on health equity and social determinants of health. The proposed study builds on the applicant’s knowledge of health inequity and disparities, hospice underutilization in African Americans living with ADRD, and qualitative methods. Training will focus on acquiring the skills needed to conduct independent research on hospice exposure and its contribution to hospice decision-making in older African Americans with ADRD and their primary family caregivers, qualitative and community-based research, and advancing the scientific understanding of end-of-life care disparity and hospice utilization in this population. The training plan, fellowship co-sponsors, and research team experts will prepare the applicant for a career as an independent researcher conducting rigorous qualitative research on health inequity and end-of-life disparities in African Americans.