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) 接受优质临终 (EoL) 护理的可能性较小。例如，护理目标。 对话是圣人、患者和临终家人之间的批判性讨论， 与白人相比，AA 发生这种情况的可能性较小，而且当这种情况发生时，偏好也不太可能被遵循。 相反，如果家庭的决定与大众不一致，他们更有可能被贴上“困难”的标签。 许多 AA 人员的 EoL 决定植根于文化和一生的经历 解决结构性种族主义的努力需要解决多种因素，例如患者层面的文化。 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， 以及在受机构种族主义影响的环境中提供终止医疗服务的医疗机构环境。 研究小组开始通过“非裔美国人社区发言”来解决这一需求，这是一个概念验证 社区开发的用于照顾患有严重疾病的 AA 老年人的培训计划的原型。 该计划最初侧重于南部农村地区的老年 AA，由于以下原因并未在美国广泛推广： 美国 AA 人士在文化、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程序以适应城市居住的南部和北部老年 AA 成年人 使用我们在两个地理区域建立的基于社区的参与性研究（CBPR）平台 不同地区：阿拉巴马州伯明翰和纽约布朗克斯创建了名为“新培训计划”的项目。 “关爱老年非裔美国人”，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： 1. 对城市进行比较人种学研究 居住在北部和南部的 AA 描述与 EoL 护理相关的 AA 社区价值观和偏好； 通过整合社区开发的故事讲述来改编我们之前社区开发的培训计划 同情 EoL 护理中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性偏见管理计划以适应护理沟通的目标；以及 3. 进行集群随机试验，其中我们将使用以下方法将训练时间随机化为 4 个开始日期中的一个： 阶梯式楔形设计可适应所有忠诚者的培训并减轻长期趋势的影响。 患者对种族主义的个人经历将使用基于群体的歧视子量表来衡量 主要结果是患者/家属对使用 The Human 的治疗联盟的看法。 次要结果是家庭报告的目标一致护理和专家知识。 文化价值观、对隐性偏见的认识以及改变实践的信心。 第一个培训计划： 1. 解决文化和谐护理、系统性种族主义和隐性偏见 2. 管理，加强提供公平护理的三个关键要素； 与美国南部和北部两个不同的 AA 社区全面合作实施。