People newly diagnosed with HIV/AIDS today are more likely to be female, young, heterosexual, a racial minority, and living in rural areas than in the past. They are also less likely to trust the health-care "system" or to have social support from community and family, often leading them to miss appointments or refuse treatment, says a new book.
" You're the First One I've Told"--New Faces of HIV in the South (Rutgers Press, 2002) introduces health-care providers and policymakers to the social and behavioral context in which rural Southerners are experiencing the latest wave of the HIV epidemic. It includes excerpts from interviews with people who have the virus, providing personal accounts of their experience with the illness.
" For the first time, we are presenting the lives of those who represent the new HIV epidemic: women, racial minorities, and the disenfranchised--those who are often not engaged in the medical system," says Kathryn Whetten-Goldstein, assistant professor of public policy studies and community and family medicine at the Center for Health Policy, Law, and Management. The center is part of Duke's Terry Sanford Institute of Public Policy. "We really believe that if we listen to people, they'll tell us the answers we're looking for" in terms of ensuring appropriate care, she says.
Whetten-Goldstein and the book's co-author, Trang Quyen Nguyen, a doctoral student in epidemiology in the School of Public Health at the University of North Carolina at Chapel Hill, interviewed twenty-five men and women infected with HIV who live in rural eastern North Carolina. They also collected data about these and others with HIV, seeking to understand more fully this group of HIV patients.
" We wanted to learn more about why they are not behaving in ways considered by health-care providers to be 'rational,' such as not taking medications or showing up for appointments," says Whetten-Goldstein. "We found that often, in the context of their lives, these behaviors made sense." For example, people with HIV living in rural communities often experience discrimination. They may miss appointments at the local clinic or fail to have prescriptions filled for fear of being identified as having HIV and being shunned by family and friends.