Hospice Access and Use by African Americans: Addressing Cultural and Institutional Barriers through Participatory Action Research
Reese, Dona J., Aher, Robin E., Nair, Shankar, O'Faire, Joleen D., Warren, Claudia, Social Work
This article describes a participatory action research project addressing the problem of African American access to and use of hospice. Qualitative interviews conducted with six African American pastors resulted in the identification of major themes used for development of a scale to measure barriers to hospice. A subsequent quantitative study documenting these barriers was conducted with 127 African Americans and European Americans. Results of both studies, which were used to further social action efforts in the community, indicated the cultural barriers of differences in values regarding medical care and differences in spiritual beliefs between African Americans and European Americans. Results also indicated institutional barriers, including lack of knowledge of services, economic factors, lack of trust by African Americans in the health care system, and lack of diversity among health care staff. Implications for social work practice and policy are discussed.
Key words: action research; diversity; hospice; spirituality; strengths perspective
Hospice developed in the United States in the 1970s as a grassroots movement to promote more humane care for dying people. Hospice philosophy stresses patient self-determination, acceptance of death, and palliative rather than curative care. In addition, it advocates for dying in the home surrounded by loved ones, rather than in an institution surrounded by technology. Social workers provide hospice care in collaboration with an interdisciplinary team of professionals, who attend to biopsychosocial and spiritual needs of patients and families. Nationwide, ethnic and racial minorities represent only 5 percent to 7 percent of the hospice patient population.
A need for hospice care in the African American community is justified by the higher cancer mortality rate (Lowe, Barg, & Bernstein, 1995) and the prevalence of the AIDS virus among African Americans (Infeld, Crum, & Koshuta, 1990). This article describes a project that was conducted within the context of a participatory action research project, aimed at increasing African American access to and use of hospice. This article provides research results that address gaps in the literature and discuss implications for social work practice and policy.
The hospice literature reflects a number of barriers to hospice access and use for African Americans. The literature in this area contains mainly nonempirically based discussion papers, as well as surveys of hospice staff and records, rather than studies carried out directly with African Americans. Before discussing these barriers, however, two issues must be considered. First, we may not assume that the African American population is homogeneous, because there is wide variability among African Americans in terms of income, education, employment, geographic region, and country of origin (Dowd, Poole, Davidbizar, & Giger, 1998; Lowe et al., 1995). Within this diversity, however, a cultural unity may be detected that traditionally has characterized many African American families (Nobles, 1974), and during the great stress of terminal illness, patients who normally do not adhere to ethnic culture may resort to traditional modes of behavior (Harwood, 1981). It may be argued, thus, that it is useful for social workers to be informed about traditional African American cultural characteristics while avoiding stereotypes and unquestioning assumptions about clients.
Second, within the European American population, hospice is not well recognized or understood (Burrs, 1995). The general population is unfamiliar with hospice (Mor, Hendershot, & Cryan, 1989), and physician barriers to hospice referral abound, including inadequate physician training (Miller, Miller, & Single, 1997), availability of a program, and Medicare requirements, including a six-month prognosis and a requirement for 24-hour family caregiver in the home (Miller et al. …