THE LAST MILE OF THE WAY:UNDERSTANDING CAREGIVING IN AFRICAN AMERICAN FAMILIES AT THE END-OF-LIFE William L. Turner, Beverly R. Wallace, Jared R. Anderson, and Carolyn Bird University of Minnesota This research is based on in-depth ethnographic interviews and focus groups with 88 African American family caregivers from various regions of the United States during a stressful time in their family development—caregiving at the end-of-life—and the grieving during the aftermath. The study employed a stratified purposeful sampling strategy. Subjects were African Americans from the Northern, Southern, and Midwestern United States. Formal care is complicated by the distrust that many African Americans hold toward the health care system, which has resulted from years of exclusion, racism and discrimination. The findings highlight the importance of hearing from African American families to gain an understanding of what services, including family therapy and other psychotherapy, they will need during this process. Our study, “End of Life Caregiving and Decision Making in the African American Community,” developed out of a felt need to fill a gap in the literature as it relates to understanding the caregiving process and context of African American families. It also stemmed from a desire to provide information to and a conceptual lens for mental health practitioners and the medical community so that they would be in a better position to aid and support families during this often difficult time. Finally, we wanted to accumulate stories of caregiving that could be fed back to the community as a resource and guide during times of death and dying. In this article we briefly outline the need for such a comprehensive study. We explain the process of conducting a collaborative, culturally sensitive study with a group often wary of those in academia, and we offer some results and clinical implications that have emerged from the preliminary analysis of our focus group interviews. CONCEPTUAL DEVELOPMENT OF FAMILY CAREGIVING In the early 1990s, the Gerontological Society of America identified strengthening the family support system for older minority group members as a major goal and listed as a research priority the examination of how families from minority groups care for older family members (Nkongho & Archbold, 1996). Similarly, recent appeals indicate a need for future studies to use qualitative and quantitative research methods to specify the pathways by which race, ethnicity, and culture affect the caregiving experience, and to expand their focus beyond the primary caregiver to include the effects of caregiving on families and networks (Crawley et al., 2000; Janevic & Connell, 2001). In the African American community, the family has been an essential institution in their survival, and Journal of Marital and Family Therapy October 2004,Vol. 30, No. 4, 427–438 October 2004 JOURNAL OF MARITAL AND FAMILY THERAPY 427 William L. Turner, PhD, Beverly R. Wallace, MDiv, Jared R. Anderson, MS, and Carolyn Bird, MS, Department of Family Social Science, University of Minnesota. This research was supported by the following grants to William L. Turner: Centers for Disease Control and Prevention grant 465285; Minnesota Department of Agriculture Experiment Station grant MN 52 082, the University of Minnesota Grant- in-Aid for Artistry, Science and Research, and the University of Minnesota President’s Multicultural Research Grant. We would like to thank the families who have graciously participated in the project and have given us access to their lives. Address correspondence to William L. Turner, Department of Family Social Science, College of Human Ecology, 290 McNeal Hall, 1985 Buford Avenue, St. Paul, Minnesota, 55108. E-mail: wlturner@che.umn.edu