NEWS

New book: Behavioral context key to providing HIV-AIDS care in the South

CHAPEL HILL -- People newly diagnosed with HIV-AIDS today are more likely to be female, young, heterosexual, a racial minority and rural residents than in the past. They also are less likely to trust the health-care system or have social support from community and family, often leading them to miss appointments or refuse treatment.

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 policy-makers to the social and behavioral context in which those in the rural South are experiencing the latest wave of the HIV epidemic. The book includes excerpts from interviews with people who have HIV, 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," said Dr. 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 University’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 added.

Whetten-Goldstein and the book’s co-author, Trang Quyen Nguyen, a doctoral student in epidemiology in the University of North Carolina at Chapel Hill School of Public Health, interviewed 25 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," said 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.

Whetten-Goldstein and Nguyen said they hope policy-makers, faculty at schools of public health and medicine, residents in infectious diseases and community health-care providers will read the book and gain a better understanding of both their patients and the context in which patients make decisions.

"A holistic understanding of the context into which HIV enters a person’s life allows us to better understand the decision-making process and resultant behaviors, thereby leading to more appropriate policies, interventions and research," said Nguyen.

The book is available from Rutgers Press, http://rutgerspress.rutgers.edu and http://www.amazon.com.

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Note: A CD with recorded readings from actual patient interviews is available by calling Cabell Smith, Duke News Service, at (919) 681-8067.

Contact note: Nguyen may be reached at (919) 932-5749. Whetten-Goldstein may be reached at (919) 684-8012.

UNC School of Public Health contact: Lisa Katz, (919) 966-7467 or lisa_katz@unc.edu