Removing the stigma of HIV and AIDS
In Tampa, Florida, in the early 1980s, young men were coming home to their parents to die. As a registered nurse, Julie Barroso cared for many of these AIDS patients in their final days.
“It was awful, seeing these young men become so ill,” says Barroso about the crisis, which decimated the gay community until a treatment was developed in 1987. “There was nothing we could do to help.”
While earning her master of science in nursing a few years later, she volunteered with the Tampa AIDS Network. That solidified her interest in the care of people living with HIV, a subject that the new professor at the School of Nursing has made the focus of her research career.
“When I saw patients as a nurse practitioner, their No. 1 complaint was of a profound fatigue,” Barroso says. “There was nothing in the literature about it and no interventions. So I started with a small qualitative study in 1998, and the research has continued over these many years.” The HIV-Related Fatigue Scale, which she developed in a National Institutes of Health-funded study, has become the benchmark used to measure fatigue for those with HIV, estimated to affect up to 60 percent of patients.
“This disease is hard enough to deal with without having to face it alone because of the stigma associated with it.”
Barroso’s research indicated that psychological or socio-demographic factors contributed more to fatigue than the physical challenges of living with HIV. That led to a second research focus: how to mitigate the stigma that many people with HIV experience or internalize. Stigma, particularly that experienced by women living with HIV, is linked to many negative outcomes, including not being willing to take antiretroviral medications in front of others for fear it may reveal their HIV status.
“I have run into my patients in public places, and have had them hug me and whisper, ‘Don’t say anything—this is my mom and she doesn’t know.’ And that broke my heart, to think of how lonely they must feel,” Barroso says. “This disease is hard enough to deal with without having to face it alone because of the stigma associated with it.”
Barroso engages technology in her research to help patients. She and her team created a program featuring a video loaded on mobile devices to help alleviate HIV-related stigma in women, and she has just finished testing an app she developed that provides cognitive behavioral stress management for people with HIV-related fatigue. Next steps include exploring other methods for the first study and expanded testing for the second.
Barroso comes to Vanderbilt from the Medical University of South Carolina, College of Nursing, where she was professor and associate dean of faculty. “Vanderbilt was really appealing as a school that was deeply invested in helping faculty conduct research,” says Barroso, who is looking forward to advancing her research and its impact. “I’d like my work to make the lives of people living with HIV a bit easier.”
by Nancy Wise
Image: John Russell