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 非洲裔美国人（AA）不太可能获得质量终止（EOL）护理。例如，护理目标 对话是临床医生，患者和家庭生命尽头之间的批判性讨论，是 与白人相比，AAS发生的可能性较小，并且在发生时遵循偏好的可能性较小。 相反，如果家庭的决定与临床医生不一致，则更有可能将家庭标记为“困难” 建议。许多AA人的EOL决策都植根于文化和一生的经验 结构性种族主义。解决分布需要解决多个因素（例如患者级文化）的努力 身份和EOL护理价值，人际关系和社区级别的EOL通信和治疗规范， 以及在受机构种族主义影响的环境中提供EOL护理的医疗机构秘密。我们的 研究小组开始通过“非裔美国人社区讲话”来满足这一需求 针对照顾患有严重疾病的AA老年人的临床医生的社区开发培训计划的原型。 该计划最初集中于南部较旧的AAS，在美国不广泛推广 在美国AA人群中的文化，吸引力和沟通偏好方面存在地理差异。 这是，我们建议将我们的原型计划调整为城市居住的南部和北部AA成年人 在两个地理上使用我们建立的基于社区的参与研究（CBPR）的平台 潜水区：伯明翰，阿拉巴马州和布朗克斯，纽约。创建名为的新培训计划 我们的CBPR，医学社会学和临床试验专家团队的“照顾年长的非裔美国人”将会 与当地社区咨询委员会合作：1。进行城市的比较人种学研究 在北部和南部居住AAS来描述与EOL护理有关的AA社区价值观和偏好； 2。 通过整合社区发展的讲故事，适应我们先前的社区发展培训计划 在EOL护理中强调种族主义经历的视频，文化和一致的EOL护理指南 交付并将现有的隐性偏见管理计划适应护理沟通目标；和3。 进行群集随机试验，在该试验中，我们将使用A随机将训练时间随机为4个起始日期中的1个 梯级楔形设计以适应所有临床医生的培训，并减轻世俗趋势的影响。 患者对种族主义的个人经验将使用基于小组的歧视量表来衡量 MISTREST量表。主要结果将是患者/家庭使用人类对治疗联盟的看法 连接量表。次要结果将是家庭报告的目标符合护理和临床医生的知识 文化价值观，对隐性偏见的意识以及改变实践的信心。这种创新的努力将是 第一个培训计划：1。解决文化上一致的护理，系统性种族主义和隐性偏见 管理层是增强公平护理提供的三个关键要素；和2。是设计的 与南部和美国北部的两个不同的AA社区完全合作。