Newswise — Older African-Americans with HIV/AIDS frequently draw upon their spiritual beliefs to cope with the disease but rarely disclose it to friends inside or outside the church, according to a study conducted by University of Alabama researchers.
The study, accepted for publication in the journal AIDS Care, is one of the first to look at the stigma of AIDS in older, rural African-Americans in the South. It is authored by Drs. Pamela Payne Foster, a physician and deputy director of UA's Rural Health Institute for Clinical and Translational Science, and Susan Gaskins, professor of nursing in UA's Capstone College of Nursing.
Gaskins earlier presented the research, sponsored by UA's Center for Mental Health and Aging, at the International AIDS Conference in Mexico City.
"While the people found religion and spirituality to be comforting in helping them through this, they did not identify either the church community or organized religion to be helpful at all," Gaskins said. "When they went to church, they didn't tell anybody because they weren't hopeful of getting support."
Initially, the researchers were most interested in learning how older African-Americans coped with the stigma associated with HIV/AIDS, but were struck by how rarely those participating in their focus groups said they disclosed their disease.
Seventy-five percent of those in The University of Alabama study indicated they didn't feel they could be open with others about their illness.
"Non-disclosure is a way that people manage the stigma they experience," Gaskins said. "It's how they protect themselves."
Foster, who moved to the South from Long Island, N.Y. about five years ago, said she's been surprised by the differences she's witnessed in disclosure rates between the two regions.
"There are not as many openly HIV positive persons in the South, so the community doesn't have as much of a concept that it's an issue. They think they don't know anybody who has HIV/AIDS," Foster said.
A July 2008 report from the Southern AIDS Coalition indicated more than 39,000 Southerners died from AIDS-related illnesses between 2001-2005. During the same period, AIDS-related deaths decreased in all regions of the U.S. except the South. The number of people living with HIV infection remains stable globally and has actually increased in the U.S. because of treatments, primarily antiretroviral therapy, the UA researchers said.
Better understanding of the stigma associated with the disease has implications for designing new prevention and education programs, encouraging earlier HIV testing, and improving social support for older people with the disease, the UA researchers said.
"A lot of times when I present educational information, people are into the stereotypes about HIV," Foster said. "They disassociate the stereotypes from the risk behaviors."
Because the disease is primarily spread by unprotected sex with an infected partner, women who contract the virus often fear others will think they are promiscuous, the researchers said.
Although 31 percent of all new HIV infections in the U.S. in 2006, according to statistics from the Centers for Disease Control and Prevention, occurred via heterosexual contact, the incorrect stereotype that HIV only affects homosexual men adds much to the stigma men feel, the researchers said. According to the CDC, 53 percent of the new infections in the U.S. were related to male to male sexual contact, 12 percent to drug injections and 4 percent to some combination of the two.
"It's not who you are," Gaskins said, "it's what you do" that determines your risk.
Study participants who did disclose their disease most often told their moms and/or their sisters, the researchers found.
Since disclosure was so limited, participants reported experiencing little to no direct stigma from others, but experienced the most stigma related to their internalized shame, the researchers said.
The 24 men and women in the four focus groups the UA researchers studied were all 50 and older and had a confirmed diagnosis of HIV. Most of them never considered themselves at risk of contracting the disease, the researchers said.
"They saw it as a young person's disease," said Foster, a researcher in UA's College of Community Health Sciences. "They think they are immune "¦ being over 50." As pregnancy is less of a concern among older adults, they are often less likely to practice safe sex, the researchers said. Consistent and correct condom use is one of the most effective means of preventing HIV transmission.
In 2005, older adults represented 24 percent of people living with HIV/AIDS, and rates of the disease in older adults are 12 times higher for African-Americans than whites, according to the CDC.
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