African American (AA) Communities Speak: Partnering with AAs in the North and South to Train Palliative Care Clinicians to Address Interpersonal and Systemic Racism and Provide Culturally Aligned Care

非裔美国人 (AA) 社区发言：与北部和南部的 AA 合作，培训姑息治疗临床医生，以解决人际和系统性种族主义并提供文化一致的护理

• 批准号: 10734272
• 负责人: RONIT ELK
• 金额: $ 68.49万
• 依托单位: UNIVERSITY OF ALABAMA AT BIRMINGHAM
• 依托单位国家: 美国
• 财政年份: 2023
• 资助国家: 美国
• 起止时间: 2023-09-01 至 2028-06-30
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10734272
• 关键词: Address; Adult; Affect; African American; African American population; Alabama; Attitude; Awareness; Caring; Clinical Trials; Cluster randomized trial; Communication; Communities; Complex; Consensus; Discrimination; Disparity; Elderly; Elements; Empathy; Equity; Ethnic Origin; Ethnography; Failure; Family; Feeling; Focus Groups; Geography; Geriatrics; Goals; Guidelines; Healthcare; Healthcare Systems; Hearing; Human; Individual; Inequity; Institution; Institutional Policy; Institutional Racism; Intervention; Intervention Studies; Interview; Investments; Knowledge; Label; Life Cycle Stages; Measures; Medical Errors; Medical Sociology; Methods; New York; Palliative Care; Patient Care; Patient-Focused Outcomes; Patients; Perception; Persons; Policies; Prognosis; Publishing; Quality of Care; Race; Randomized; Recommendation; Reporting; Research; Resources; Rural; Shapes; Social Change; Societies; Stress; Structural Racism; Structure; Therapeutic; Training; Training Programs; Voice; Work; care delivery; community based participatory research; comparative; cultural values; design; disparity gap; disparity reduction; efficacy evaluation; empowerment; end of life; end of life care; end-of-life communication; experience; geographic difference; health care settings; health inequalities; implicit bias; improved; innovation; maltreatment; member; neglect; palliative; preference; primary outcome; programs; prototype; racial disparity; racism; secondary outcome; social; social culture; social health determinants; systematic review; trend; urban dwelling

PROJECT ABSTRACT African Americans (AA) are less likely to receive quality end-of-life (EoL) care. For example, goals of care conversations, which are critical discussions between clinicians, patients and families near the end of life, are less likely to occur for AAs than for Whites, and preferences are less likely to be followed when they do occur. Instead, families are more likely to be labelled as “difficult” if their decisions are incongruent with clinicians’ recommendations. EoL decisions for many AA persons are rooted in both culture and a lifetime of experiences of structural racism. Efforts to address disparities need to address multiple factors such as patient-level cultural identity and EoL care values, interpersonal- and community-level norms for EoL communication and treatment, and healthcare institutional-contexts for delivering EoL care in a setting affected by institutional racism. Our research group began to address this need with ‘African American Community Speaks’, a proof-of-concept prototype of a community-developed training program for clinicians caring for AA older adults with serious illness. The program originally focused on rural Southern older AAs and is not broadly generalizable across the US due to geographic differences in culture, attitudes, and communication preferences among AA persons in the US. Thus, we propose to adapt our prototype program to urban-dwelling Southern and Northern older AA adults using our established platform of Community-Based Participatory Research (CBPR) in two geographically diverse regions: Birmingham, Alabama and the Bronx, New York. To create the new training program called ‘Caring for Older African Americans’, our team of experts in CBPR, medical sociology, and clinical trials will work with local Community Advisory Boards to: 1. Conduct a comparative ethnographic study of urban- dwelling AAs in the North and South to describe AA community values and preferences related to EoL care; 2. Adapt of our prior community-developed training program by integrating community-developed storytelling videos for empathizing with experiences of racism in EoL care, guidelines for culturally concordant EoL care deliver, and adapting an existing implicit bias management program to goals of care communication; and 3. Conduct a cluster randomized trial in which we will randomize training times to 1 of 4 start dates using a stepped wedge design to accommodate training of all clinicians and to mitigate the effect of secular trends. Patients’ personal experience of racism will be measured using the discrimination subscale of the Group Based Mistrust Scale. The primary outcome will be patient/family’s perception of therapeutic alliance using The Human Connection Scale. Secondary outcomes will be family-reported goal-concordant care, and clinicians’ knowledge of cultural values, awareness of implicit bias, and confidence to change practice. This innovative effort will be the first training program that: 1. addresses culturally concordant care, systemic racism and implicit bias management, the three key elements in enhancing the provision of equitable care; and 2. is designed and implemented in full partnership with two distinct AA communities in the South and the North of the US.

项目摘要 非裔美国人（AA）不太可能获得高质量的临终关怀。例如，护理目标 谈话，这是临床医生，病人和家庭之间的关键讨论接近生命的尽头， 与白人相比，AA发生的可能性更小，并且偏好发生时不太可能被遵循。 相反，如果家庭的决定与临床医生的决定不一致， 建议.许多AA人员的EoL决策植根于文化和一生的经验 结构性种族主义。解决差异的努力需要解决多种因素，如患者层面的文化差异， 身份和EoL护理价值观，EoL沟通和治疗的人际和社区层面规范， 和医疗机构的背景下提供EoL护理的设置受制度性种族主义。我们 一个研究小组开始通过“非裔美国人社区演讲”来解决这一需求，这是一个概念验证 这是一个社区开发的培训计划的原型，用于照顾患有严重疾病的AA老年人的临床医生。 该计划最初侧重于南部农村的老年人，由于 美国AA人群在文化、态度和沟通偏好方面的地理差异。 因此，我们建议调整我们的原型计划，以城市居住的南方和北方老年AA成人 利用我们建立的基于社区的前瞻性研究（CBPR）平台，在两个地理位置 不同的地区：伯明翰，亚拉巴马和布朗克斯，纽约。创建新的培训计划， “照顾老年非裔美国人”，我们的CBPR，医学社会学和临床试验专家团队将 与当地社区咨询委员会合作，以：1。进行比较民族志研究的城市- 居住在北方和南方的AA描述AA社区价值观和与EoL护理相关的偏好; 2. 通过整合社区开发的故事讲述来适应我们之前的社区开发的培训计划 在EoL护理中同情种族主义经历的视频，文化一致的EoL护理指南 提供，并调整现有的隐式偏见管理计划，以实现护理沟通的目标;以及3. 进行一项群集随机试验，我们将使用 阶梯式楔形设计，以适应所有临床医生的培训并减轻长期趋势的影响。 患者的个人种族主义经历将使用基于群体的歧视分量表进行测量。 不信任量表。主要结果将是患者/家属对使用人类治疗联盟的看法。 连接比例。次要结果将是家庭报告的目标一致的护理，和临床医生的知识 文化价值观，对隐性偏见的认识，以及改变实践的信心。这一创新努力将是 第一个培训计划是：1。解决文化上的和谐照顾，系统的种族主义和隐性偏见 管理，加强提供公平护理的三个关键要素; 2.设计并 与美国南部和北部两个不同的AA社区全面合作实施。