African American (AA) Communities Speak: Partnering with AAs in the North and South to Train Palliative Care Clinicians to Provide Quality Care
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African Americans (AA) are more likely to receive ineffective and burdensome interventions at end-of-life (EoL) and are less likely to receive palliative care or enroll in hospice. For example, goals of care conversations, which are critical discussions between clinicians, patients and families near the EoL, are less likely to occur for AAs than for Whites. EoL decisions for many AA persons are informed by their prior experiences with healthcare. Efforts to improve EoL care need to address patient-level needs and EoL care values, interpersonal- and community-level norms for EoL communication and treatment, and healthcare institutional- contexts for delivering EoL care. 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 experiences, 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 healthcare, guidelines for EoL care delivery that meets AAs needs, and understanding how clinicians’ assumptions and perceptions shape 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’ trust of the healthcare system will be measured using 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 values, awareness of assumptions and perceptions, and confidence to change practice. This innovative effort will be the first training program that: 1. addresses care tailored to the needs of AAs, management of assumptions and preferences, the key elements in enhancing the provision of high quality care; and 2. is designed and implemented in full partnership with two distinct communities in the South and the North of the US.
