Social Networks and Community Resources among Older, African American Caregivers of People Living with HIV/AIDS

Article excerpt

Abstract Initially associated with large urban centers, the HIVI AIDS epidemic in African American communities is now being acknowledged in suburban and rural areas across the country. As the disease is being recognized in other areas, the impact of the disease has posed many challenges in the African American community. One such challenge is experienced by older caregivers as they struggle to provide support to their younger loved ones who are living with the virus. This paper discusses how the social stigma of HIV disease affects their caregiving roles, social networks and use of community resources such as the black church. Recommendations are presented for further study in this vulnerable caregiver population.

Keywords Elderly, African Americans, HIV/AIDS, Caregivers


The incidence of acquired immune deficiency syndrome (AIDS) cases among African Americans continue to be reported in record numbers across the United States.- As of December, 1998, 251,408 they have been diagnosed with AIDS (Centers for Disease Control and Prevention, 1999). Although African Americans are 13% of the national population, they account for 37% of people diagnosed with AIDS (Bureau of the Census, 1997; Centers for Disease Control and Prevention, 1999).

The high incidence of reported AIDS cases has been traditionally associated with large urban centers such as New York City. However, the impact of human immune deficiency virus (HIV) and AIDS has been slowly recognized in rural and urban areas that border urban centers (Belluck, 1998; Centers for Disease Control, 1989; Ellerbrock, 1992; National Commission on AIDS, 1990; National Research Council, 1993; AIDS Institute, 1995; Wallace, et al. 1995; Wallace & Wallace, 1997; Wasser, Gwinn, & Flemming, 1993; Young, 1992). More recently, Long Island, New York has been identified as havin the highest incidence of HIV/AIDS, among suburban areas nationwide (Centers for Disease Control and Prevention, 1998; Hernandez, 1997).

Long Island is located near New York City and comprises two suburban counties (Nassau and Suffolk). AIDS cases have been reported in record numbers among African Americans living on Long Island. Similar to the national trends on AIDS, African Americans living with AIDS comprise a rate that exceeds their total population living in this area (37% and 7%, respectively) (New York State Department of Health, 1999: Bureau of Census, 1997).


Family caregivers of people living with HIV/ AIDS are faced with challenging problems as they strive to provide care and support to loved ones. Contributing to these challenges is the complex nature of the disease and prescribed treatments. A common thread in the review of the general caregiving literature is the problem of caregiver burden, which includes the emotional, physical, financialand social effects of providing care (Cantor, 1983; George & Gwyther, 1986; Zarit, Reever & BachPeterson, 1980). In looking at caregiving situations related to HIV/AIDS, the social stigma of the disease has had a major impact on the families of gay men, children, elderly, and minority men and women living with HIV/AIDS (Baker, Sudit & Litwak, 1998a; Baker, Sudit & Litwak, 1998b; Bonuck, 1993; Hays, et al., 1993; Macklin, 1988; Matocha, 1992; Takigiku, Brubaker, & Hennon, 1993; Reidy, Taggart, & Asselin, 1991). In essence, across types of people living with HIV/AIDS, the problem of stigma is a common concern.

Besides the demographic and geographical characteristics of AIDS, the impact of this disease has created a great demand for caregiving assistance in the African American community. Since AIDS is a chronic illness with potentially debilitating and terminal effects, the need for providing assistance to people living with HIV/AIDS in communities has been reported (Baker, Sudit & Litwak, 1998a; Katoff, 1992; Litwak, Sudit, Baker, Dobkin & Fullilove, 1995; Morrison, 1993). …