title: African American client satisfaction with hospice: a comparison of primary caregiver experiences within and outside of hospice.
abstract: This study, conducted within a larger participatory action research project, explored satisfaction with end-of-life care among African Americans in a rural southeastern community. Researchers collaborated with practitioners and the African American community, conducting qualitative interviews with 1 African American hospice patient, 9 primary caregivers of terminally ill patients within hospice, and 10 family caregivers outside of hospice. Results indicated a more positive experience for hospice patients, and that most nonhospice participants preferred hospice after learning about it through the study. Participants made recommendations for public information efforts, the referral and intake process, and developing a relationship with the African American community. Implications for practice are to include the reasons found for African American preference for hospice in public information sessions with the African American community.
authors.affiliation: School of Social Work, Southern Illinois University, Carbondale, IL, USA djreese@siu.edu.
authors.forename: Dona J
authors.initials: DJ
authors.lastname: Reese
authors.affiliation: Office of Minority Health & Health Disparities, Arkansas Department of Health, Little Rock, AR, USA.
authors.forename: Michelle R
authors.initials: MR
authors.lastname: Smith
authors.affiliation: Bureau of Primary Health Care, Health Resources and Services Administration, Rockville, MD.
authors.forename: Charlotte
authors.initials: C
authors.lastname: Butler
authors.affiliation: Department of Health Education and Recreation, Southern Illinois University, Carbondale, IL, USA.
authors.forename: Sabita
authors.initials: S
authors.lastname: Shrestha
authors.affiliation: Office of Cancer Health Disparities Research, Division of Cancer Prevention and Population Sciences, Roswell Park Cancer Institute, University at Buffalo, State University of New York, Buffalo, NY, USA.
authors.forename: Deborah O
authors.initials: DO
authors.lastname: Erwin
mesh_terms: D000328:Adult; D001741:Black or African American; D000368:Aged; D017028:Caregivers / Q000523:psychology*; D003258:Consumer Behavior; D005260:Female; D017051:Hospice Care / Q000458:organization & administration*; D006801:Humans; D008297:Male; D008875:Middle Aged; D017060:Patient Satisfaction; D012424:Rural Population; D012959:Socioeconomic Factors; D013727:Terminal Care / Q000458:organization & administration
keywords: African American; access; client satisfaction; community outreach; cultural competence; hospice; interdisciplinary; participatory action research