Addressing Communication Challenges Confronting Older African Americans with Multiple Chronic Conditions and their Family Caregivers
Nearly 69% of African American (AA) Medicare beneficiaries have multiple chronic conditions (MCCs) such as cancer and cardiopulmonary diseases. Older age and MCCs are guideline-recommended indications for referral to early palliative care to assist with effective communication and value-solicitation surrounding treatment decision-making. Studies have shown that early palliative care participation achieves beneficial goals of care communication, quality of life (QOL), symptom burden, and mood in older adults with cancer and heart failure as well as among their family caregivers. However, older AAs with MCCs, especially those living in the Deep South, are less likely to have access to early palliative care, even though they generally experience higher symptom burden, healthcare use, and poorer communication around goals of care. This disparity in palliative care use may be, in part, to a lack of culturally-responsive care practices that effectively activate AAs with MCCs to identify their own values and priorities for end-of-life care. While efficacious communication models exist, few have been tested in culturally-diverse samples. Guided by the theory of Social Cognitive Theory and Health Behavior Model, this study’s purpose is to conduct a formative evaluation of a Self-directed “My Health Priorities” Identification Program to determine cultural acceptability and feasibility of use in among AAs with MCCs in a primary care setting. The 2-phase study specific aims are to:
Aim 1. (Phase 1) Conduct a single-arm formative evaluation trial of Self-directed “My Health Priorities” Identification Program to determine acceptability and feasibility with a sample of 20 AA patients with MCCs and FCGs and adapt for future efficacy testing.
Aim 2. (Phase 2) To examine the ability of the dyads to complete pre- and post-test measures of perception of care, treatment burden, shared decision-making, and communication exchange.
The findings from the research will directly inform a small-scale pilot grant that will assess acceptability, feasibility, and potential efficacy of a values solicitation and operationalization intervention for AAs with MCCs and caregivers.
Deborah Ejem, PhD, MA is a medical sociologist and Assistant
Professor in the School of Nursing at the University of Alabama at Birmingham
(UAB). Dr. Ejem’s research focuses on seeking ways to address disparities that result from inadequate
attention to cultural, spiritual, and family values’ influence on palliative
care communication. Dr. Ejem earned her PhD, MA in Sociology, and BS and BA in
Biology and Sociology from UAB. She completed two palliative-care focused
postdoctoral programs in the School of Nursing and Department of Preventive
Medicine also at UAB.