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

患有 ADRD 的老年非洲裔美国人及其决策支持人员的临终关怀暴露和利用

• 批准号: 10679558
• 负责人: Emika S. Miller
• 金额: $ 4.43万
• 依托单位: OHIO STATE UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2023
• 资助国家: 美国
• 起止时间: 2023-05-03 至 2024-11-02
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10679558
• 关键词: Address; Adult; Affect; African American; African American population; Age Years; Alzheimer' s disease related dementia; Attention; Attitude; Awareness; Caregivers; Caring; Cessation of life; Characteristics; Collection; Communities; Decision Making; Development; Device or Instrument Development; Disease; Disparity; Effectiveness; Elderly; Enrollment; Family Caregiver; Fellowship; Foundations; Frequencies; Future; Health; Health Care Costs; Health Information National Trends Survey; Health Personnel; Health behavior; Hospitals; Impaired cognition; Intervention; Interview; Knowledge; Life; Measures; Medical; National Institute of Nursing Research; Not Hispanic or Latino; Nurses; Oncology; Patients; Perception; Persons; Philosophy; Population; Process; Qualitative Methods; Qualitative Research; Quality of life; Research; Research Personnel; Research Training; Risk; Sampling; Sampling Studies; Scientific Advances and Accomplishments; Scientist; Services; Signal Transduction; Social Network; Source; Strategic Planning; Structure; Surveys; Training; United States; Vulnerable Populations; care recipients; career; cognitive ability; community based research; coronavirus pandemic; cost; design; end of life; end of life care; ethnic minority; experience; family influence; functional decline; health disparity; health equity; health equity promotion; health inequalities; hospice environment; improved; instrument; perceived discrimination; racial disparity; racial minority; skill acquisition; skills; social health determinants; trend; trustworthiness; willingness

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.

项目摘要/摘要 阿尔茨海默氏病和相关痴呆症（ADRD）影响了全球约5000万[1] 面临发展这种限制生命的疾病的风险增加的非洲裔美国人，最终以最终为特征 失去认知能力和独立性。 ADRD具有不可预测的轨迹，进行了生命终止计划 与主要家庭护理人员的命令，包括考虑使用临终关怀服务。 尽管临终关怀受益，但非洲裔美国人的服务不足，经常选择接受 侵略性和昂贵的寿命治疗。非裔美国人在死亡的风险也增加 医院。非裔美国人临终关怀的障碍包括医疗不信任，缺乏知识和缺乏 患者的价值观与临终关怀哲学之间的一致性。但是，深入探索 关于临终关怀信息的来源和看法，尤其是在ADRD的人中，已经获得了 很少关注。了解与Adrd居住的年长的非洲裔美国人及其 经常担任决策支持人员的小学家庭护理人员，收到临终关怀信息以及如何 临终关怀对决策的影响可能会更好地为临终关怀的决策对话提供信息。在这个 探索性，定性研究，我们将以约30种形式进行深入的半结构化访谈 与ADRD一起生活的非裔美国人的家庭护理人员（1）确定来源和 临终关怀信息暴露的特征和（2）探索可感知的可信度和有效性 临终关怀信息和信息对临终关怀决策过程的影响。以前的 家庭护理人员有丰富的经验，可以就临终关怀的决策提供独特的观点 - 制作过程。调查结果将为识别医院的文化仪器的开发提供信息 信息源，决策和将来的干预措施，以改善临终关怀的利用并减少最终 与ADRD一起生活的年长的非洲裔美国人的生活差异。拟议的研究和培训计划保持一致 国立护理研究所卫生公平和社会决定者的战略计划 健康。拟议的研究基于申请人对健康不平等和差异的了解，医院 非洲裔美国人的充分利用和定性方法。培训将重点 负责对临终关怀暴露进行独立研究所需的技能及其对 ADRD及其主要家庭护理人员的非洲裔美国人的临终关怀决策，定性 以及基于社区的研究，并提高对寿命终止护理差异的科学理解和 该人群中的临终关怀。培训计划，奖学金共同赞助者和研究团队专家将 为申请人准备职业，作为独立研究人员进行严格的定性研究 非洲裔美国人的健康不平等和临终关系差异。