William Barton
Indiana University School of Social Work
902 West New York St.
Indianapolis IN 46202-5156
U.S.
Phone: (317) 274-6711
FAX: (317) 274-8630
Email: wbarton@iupui.edu

Purpose:  A statewide, family-oriented needs assessment was conducted to provide systematic documentation of the following:  1) psychosocial needs and resources of family caregivers facing HIV//AIDS, 2) impact of HIV disease on multiple levels of the family system, 3) nature and quality of available social supports and agency services, 4) similarities and differences in the experiences of rural versus urban family members.

Methods:  214 comprehensive structured interviews were conducted with caregivers of persons with HIV/AIDS regarding their experiences and perceived needs.  142 of these were currently providing care to the PWA; the other 72 were bereaved at the time of the interview.  Respondents were partners or spouses (34%); parents (29%); siblings (17%); and friends (8%).  Two-thirds were Caucasion; 23% African-Americans; and 12% Latino.

Results:  Most family caregivers evidenced strong commitment to providing care and support to their loved one and assumed significant roles and responsibilities providing a wide range of assistance from emotional support (82%), locating and arranging for services (58%), to direct care (40%).  Fewer than half drew upon psychosocial services and resources such as support groups, individual or family counseling.  In comparison to other caregiver-types, spouses evidenced the highest levels of stress and difficulty coping as seen in such areas as greater resentment around care-giving, more conflict and strain in their relationships with PWA's, poorer self-esteem, and generally poorer health.

Implications for Practice:  As the epidemic continues to unfold, family caregivers will continue to represent a significant social reesource for those with the disease.  Policy and program initiatives should be responsive to the needs of family caregivers for emotional and social support, education/infor- mation, and other social services with outreach extended to those caregivers less likely to seek them out.