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 阿尔茨海默病和相关痴呆症（ADRD）影响全球约5000万人[1]， 非裔美国人面临着患上这种限制生命的疾病的风险增加， 丧失认知能力和独立性。ADRD具有不可预测的轨迹，使生命周期结束规划 与主要家庭照顾者一起，包括考虑使用临终关怀服务。 尽管临终关怀的好处，非洲裔美国人利用服务不足，往往选择接受 积极和昂贵的生命末期治疗。非洲裔美国人在非洲的死亡风险也在增加。 医院非裔美国人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，深入探讨 关于临终关怀信息的来源和看法，特别是在ADRD患者中， 很少注意。了解老年非裔美国人ADRD的来源及其 主要的家庭照顾者，谁往往作为决策支持的人，接收临终关怀的信息，以及如何 临终关怀暴露影响决策可能会更好地告知临终关怀决策对话。在这 探索性，定性研究，我们将进行深入的半结构化访谈，约30前 患有ADRD的老年非裔美国人的家庭照顾者（1）确定来源， 安宁疗护资讯曝光的特性;（2）探讨安宁疗护资讯曝光的可信度与有效性 安宁疗护资讯及其对安宁疗护决策过程的影响。前 家庭照顾者有丰富的经验，可以提供一个独特的角度对临终关怀的决定- 制作过程。调查结果将为文化上适当的工具的发展提供信息，以确定临终关怀 信息来源，决策和未来的干预措施，以提高临终关怀的利用率，减少终末- 老年非裔美国人ADRD患者的生活差异。拟议的研究和培训计划 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人对健康不公平和差异，临终关怀， 在非裔美国人生活与ADRD的使用不足，和定性方法。培训将侧重于 获得进行临终关怀暴露及其贡献的独立研究所需的技能， 老年非裔美国人ADRD及其主要家庭照顾者的临终关怀决策，定性 和以社区为基础的研究，推进对临终关怀差距的科学认识， 在这个人群中的使用。培训计划、研究金共同赞助者和研究小组专家将 准备申请人的职业生涯作为一个独立的研究人员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。