title: The last mile of the way: understanding caregiving in African American families at the end-of-life.
abstract: 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.
authors.affiliation: Department of Family Social Science, University of Minnesota, College of Human Ecology, 290 McNeal Hall, 1985 Buford Avenue, St. Paul, Minnesota 55108, USA. wlturner@che.umn.edu
authors.forename: William L
authors.initials: WL
authors.lastname: Turner
authors.forename: Beverly R
authors.initials: BR
authors.lastname: Wallace
authors.forename: Jared R
authors.initials: JR
authors.lastname: Anderson
authors.forename: Carolyn
authors.initials: C
authors.lastname: Bird
mesh_terms: D001741:Black or African American / Q000523:psychology* / Q000706:statistics & numerical data; D001293:Attitude to Death; D017028:Caregivers / Q000523:psychology* / Q000706:statistics & numerical data; D005195:Family Relations; D005196:Family Therapy / Q000379:methods; D005260:Female; D005845:Georgia / Q000453:epidemiology; D006301:Health Services Needs and Demand; D006801:Humans; D007087:Illinois / Q000453:epidemiology; D008297:Male; D008910:Minnesota / Q000453:epidemiology; D009518:New York / Q000453:epidemiology; D009657:North Carolina / Q000453:epidemiology; D010342:Patient Acceptance of Health Care / Q000208:ethnology* / Q000706:statistics & numerical data; D012144:Respite Care / Q000523:psychology* / Q000706:statistics & numerical data; D012944:Social Support; D012959:Socioeconomic Factors; D011795:Surveys and Questionnaires