Document text
Principal Investigator: Emika S. Miller
Organization: OHIO STATE UNIVERSITY
Fiscal Year: 2024
Award: $27,508
Funding agency: National Institute on Aging
PROJECT SUMMARY/ABSTRACT
Alzheimer’s disease and related dementias (ADRD) affect approximately 50 million [1] people worldwide, with
African Americans facing an increased risk of developing this life-limiting disease characterized by the eventual
loss of cognitive ability and independence. ADRD has an unpredictable trajectory, making end-of-life planning
in conjunction with primary family caregivers imperative, including considering the use of hospice services.
Despite the benefits of hospice, African Americans underutilize the services, often opting to undergo
aggressive and costly end-of-life treatment. African Americans are also at increased risk of dying in the
hospital. Barriers to hospice use in African Americans include medical mistrust, lack of knowledge, and lack of
congruence between the patient’s values and the hospice philosophy. However, in-depth exploration of the
sources of and perceptions about hospice information, especially among persons with ADRD, has garnered
little attention. Understanding the sources from which older African Americans living with ADRD and their
primary family caregivers, who often serve as decisional support persons, receive hospice information and how
hospice exposure influences decision-making may better inform hospice decision-making conversations. In this
exploratory, qualitative study, we will conduct in-depth semi-structured interviews with approximately 30 former
family caregivers of older African Americans who lived with ADRD to (1) identify the sources and
characteristics of hospice information exposure and (2) explore the perceived credibility and effectiveness of
hospice information and the influence of the information on the hospice decision-making process. Former
family caregivers have a wealth of experience and can provide a unique perspective on the hospice decision-
making process. Findings will inform the development of culturally appropriate instruments to identify hospice
information sources, decision-making, and future interventions to improve hospice utilization and reduce end-
of-life disparities in older African Americans living with ADRD. The proposed research and training plan aligns
with the National Institute of Nursing Research Strategic Plan on health equity and social determinants of
health. The proposed study builds on the applicant’s knowledge of health inequity and disparities, hospice
underutilization in African Americans living with ADRD, and qualitative methods. Training will focus on
acquiring the skills needed to conduct independent research on hospice exposure and its contribution to
hospice decision-making in older African Americans with ADRD and their primary family caregivers, qualitative
and community-based research, and advancing the scientific understanding of end-of-life care disparity and
hospice utilization in this population. The training plan, fellowship co-sponsors, and research team experts will
prepare the applicant for a career as an independent researcher conducting rigorous qualitative research on
health inequity and end-of-life disparities in African Americans.
Terms: <21+ years old><65 and older><65 or older><65 years of age and older><65 years of age or more><65 years of age or older><65+ years><65+ years old><> 65 years><AD related dementia><ADRD><Address><Adult><Adult Human><Affect><African American><African American group><African American individual><African American people><African American population><African Americans><Afro American><Afroamerican><Age Years><Aged 65 and Over><Alzheimer's and related dementias><Alzheimer's disease and related dementia><Alzheimer's disease and related disorders><Alzheimer's disease or a related dementia><Alzheimer's disease or a related disorder><Alzheimer's disease or related dementia><Alzheimer's disease related dementia><Attention><Attitude><Awareness><Care Givers><Caregivers><Caring><Cell Communication and Signaling><Cell Signaling><Cessation of life><Characteristics><CoV pandemic><Cognitive Disturbance><Cognitive Impairment><Cognitive decline><Cognitive function abnormal><Collection><Communities><Death><Decision Making><Development><Device or Instrument Development><Disease><Disorder><Disparities><Disparity><Disturbance in cognition><Effectiveness><Family Care Giver><Family Caregiver><Fellowship><Foundations><Frequencies><Future><HINTS><Health><Health Care Costs><Health Care Providers><Health Costs><Health Inequity><Health Information National Trends Survey><Health Personnel><Health behavior><Healthcare Costs><Healthcare Providers><Healthcare worker><Hospices><Hospitals><Impaired cognition><Inequalities in Health><Inequities in Health><Intervention><Intervention Strategies><Interview><Intracellular Communication and Signaling><Investigators><Knowledge><Life><Measures><Medical><National Institute of Nursing Research><Non-Hispanic><Nonhispanic><Not Hispanic or Latino><Nurses><Oncology><Oncology Cancer><Patients><Perception><Persons><Philosophy><Population><Process><QOL><Qualitative Methods><Qualitative Research><Quality of life><Research><Research Personnel><Research Training><Researchers><Risk><Sampling><Sampling Studies><Scientific Advances and Accomplishments><Scientist><Services><Signal Transduction><Signal Transduction Systems><Signaling><Social Network><Source><Strategic Planning><Structure><Survey Instrument><Surveys><Training><United States><Vulnerable Populations><above age 65><adulthood><after age 65><age 65 and greater><age 65 and older><age 65 or older><age > 65><age of 65 years onward><aged 65 and greater><aged 65+><aged ≥65><biological signal transduction><care receiver><care recipients><career><cognitive ability><cognitive dysfunction><cognitive loss><community based design><community based research><coronavirus pandemic><cost><decline in function><decline in functional status><design><designing><developmental><device development><disparities in race><disparity due to race><disparity in health><end of life><end of life care><end-of-life><ethnic minority><experience><experienced discrimination><family influence><functional decline><functional status decline><health care personnel><health care worker><health disparity><health equity><health equity promotion><health inequalities><health provider><health related behavior><health workforce><healthcare personnel><hospice enrollment><hospice environment><hospice use><hospice utilization><human old age (65+)><improved><inequality due to race><inequity due to race><instrument><instrument development><interventional strategy><medical personnel><nurse><old age><older adult><older adulthood><over 65 years><perceived discrimination><perception of discrimination><promote health equity><qualitative reasoning><race based disparity><race based inequality><race based inequity><race disparity><race related disparity><race related inequality><race related inequity><racial disparity><racial inequality><racial inequity><racial minority><racially unequal><scientific accomplishments><scientific advances><self-reported discrimination><skill acquisition><skill development><skills><social health determinants><treatment provider><trend><trustworthiness><vulnerable group><vulnerable individual><vulnerable people><willingness><≥65 years>