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
Awardee OrganizationUNIVERSITY OF ALABAMA AT BIRMINGHAM
Description
Abstract Text
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.
Public Health Relevance Statement
PROJECT NARRATIVE
African Americans are less likely to receive quality end-of-life (EoL) care. Addressing disparities in EoL care will
need efforts to support a better understanding of African American patients’ EoL cultural values and preferences
for EoL communication, and the impact of historical and ongoing care delivery inequities in healthcare settings.
Our proposed “Caring for Older African Americans” training program is designed to empower clinicians to
improve goal-concordant EoL care delivery by using community-developed storytelling videos to create empathy
with experiences of racism in EoL care, guidelines for culturally concordant EoL care delivery, and an implicit
bias recognition and management training to mitigate bias in goals of care communication.
NIH Spending Category
No NIH Spending Category available.
Project Terms
AddressAdultAffectAfrican AmericanAfrican American populationAlabamaAttitudeAwarenessCaringClinical TrialsCluster randomized trialCommunicationCommunitiesComplexConsensusDiscriminationDisparityElderlyElementsEmpathyEquityEthnic OriginEthnographyFailureFamilyFeelingFocus GroupsGeographyGeriatricsGoalsGuidelinesHealthcareHealthcare SystemsHearingHumanIndividualInequityInstitutionInstitutional PolicyInstitutional RacismInterventionIntervention StudiesInterviewInvestmentsKnowledgeLabelLife Cycle StagesLived experienceMeasuresMedical ErrorsMedical SociologyMethodsNew YorkPalliative CarePatient CarePatient-Focused OutcomesPatientsPerceptionPersonsPoliciesPrognosisPublishingQuality of CareRaceRandomizedRecommendationReportingResearchResourcesRuralShapesSocial ChangeSocietiesStressStructural RacismStructureTherapeuticTrainingTraining ProgramsVoiceWorkcare deliverycommunity advisory boardcommunity based participatory researchcomparativecultural valuesdesigndisparity gapdisparity reductionefficacy evaluationempowermentend of lifeend of life careend-of-life communicationexperiencegeographic differencehealth care settingshealth inequalitiesimplicit biasimprovedinnovationmaltreatmentmemberneglectolder adultpalliativepreferenceprimary outcomeprogramsprototyperacial disparityracismsecondary outcomesocialsocial culturesocial health determinantssystematic reviewtrendurban dwelling
No Sub Projects information available for 5R01AG078255-02
Publications
Publications are associated with projects, but cannot be identified with any particular year of the project or fiscal year of funding. This is due to the continuous and cumulative nature of knowledge generation across the life of a project and the sometimes long and variable publishing timeline. Similarly, for multi-component projects, publications are associated with the parent core project and not with individual sub-projects.
No Publications available for 5R01AG078255-02
Patents
No Patents information available for 5R01AG078255-02
Outcomes
The Project Outcomes shown here are displayed verbatim as submitted by the Principal Investigator (PI) for this award. Any opinions, findings, and conclusions or recommendations expressed are those of the PI and do not necessarily reflect the views of the National Institutes of Health. NIH has not endorsed the content below.
No Outcomes available for 5R01AG078255-02
Clinical Studies
No Clinical Studies information available for 5R01AG078255-02
News and More
Related News Releases
No news release information available for 5R01AG078255-02
History
No Historical information available for 5R01AG078255-02
Similar Projects
No Similar Projects information available for 5R01AG078255-02