Developing a Culturally Tailored Palliative Care Program with Guidance from Rural African American and White Community Members: A Program by the Community for the Community (FR461B)

Abstract

•Gain an understanding of need for cultural tailoring in rural African American and white communities for palliative care (PC) programs.•Hear about a new approach for developing a culturally tailored PC program in collaboration with the community that meets the common and unique needs of African American and white rural elders.•Examine results that are common to both groups and those that are unique to African American or white. A culturally appropriate model of end-of-life care that takes into consideration the diverse cultural preferences of rural, terminally ill African Americans and whites is lacking. To develop a culturally tailored palliative care (PC) program with the guidance of African American and white community members that will meet the common and unique needs of rural elders at end of life. The goal of this second phase of a three-phase study is to gather input from African American and white community members into a future PC program. In the tradition of Community Based Participatory Research (CBPR), a Community Advisory Group (CAG) of community leaders and family members who had recently lost a loved one was formed. The CAG met monthly for a year with the research team and systematically reviewed the qualitative thematic results of the end-of-life care preferences of African American and white caregivers who had participated in focus groups in Phase 1. Based on these preferences, CAG made recommendations for a PC program that would meet the common and unique needs of their communities. Recommendations that were common to both groups include: The Physician should elicit whether family wants to hear about prognosis and treatment and discuss these with compassion and consideration. Recommendations that were unique to African American group include: Physician should respect and state that God or a higher power, and not the physician, determines when the patient will pass. The physician should recognize and appreciate a family’s determination to care for their loved one at home. The family’s pastor is central, and his or her involvement is preferred to that of the hospice chaplain. Developing a culturally tailored PC program in collaboration with the community is feasible and builds trust and ownership. Acceptability of the program will be a hospital-tested program in Phase 3.