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Study uses Facebook groups to raise awareness of HIV and testing

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Researchers are testing how helpful social media can be for raising awareness of health care issues or as a tool for prevention.

In a study that hits on both counts, UCLA researchers set out to see if African-American and Latino gay men would voluntarily use health-related Facebook groups to discuss HIV issues, such as stigma and prevention, with a goal of getting them to request an at-home HIV test kit.

Study participants either were assigned to a general health group on Facebook or to an HIV-prevention group. Both groups were created by the research team and not accessible by the general public.

Peer leaders began the conversations to gain the support and trust of members, introducing topics using multimedia methods, said researcher Sean Young, assistant professor at the Center for Behavioral and Addiction Medicine, Department of Family Medicine at the University of California, Los Angeles. Over time, participants took over the peer leader roles and initiated their own conversations.

Men in the HIV-prevention group talked freely about their HIV knowledge, prevention, testing, stigma and advocacy. Those over age 31 were more likely to chat about prevention, testing, stigma and advocacy, while younger participants were more interested in gaining HIV knowledge.

“It might be that younger participants were interested in friendly conversations and general learning about HIV, but discussed stigma and testing experiences less frequently due to being younger and less experienced with these topics,” Young said. “Older participants might have had more direct experience with testing and experiencing HIV-related stigma and may therefore have had more to contribute.”

The bottom line was that men who posted messages about prevention and testing were 11 times more likely to ask for a HIV test kit.

There are challenges in using social media in this type of research however, such as privacy concerns.

“We had a very unique and important group of participants because of their high risk for HIV,” Young said. “They were minority men who have sex with men, many of whom reported having never been in an HIV prevention study nor having disclosed to others that they were MSM.”

He said they were more willing to go ahead with the project when they learned Facebook itself was not involved and the groups were secret so that only participants and researchers saw them.

Young also said he has found that while using social media or online contact can be easier and reach a larger audience, face-to-face contact often is more influential.

Young and colleagues are still analyzing data from this study. They also are working on other projects using social media, such as using Twitter for HIV prevention and taking what they’ve learned to the next level with a support platform for HIV prevention.

“We are currently working on a number of studies using Twitter, however, the technology used needs to be tailored to the population and aims,” he said. “For this particular study, we determined that Facebook would be the most appropriate technology. I have another paper where I briefly discuss some of the work we are doing with Twitter as well the decision process that we made when choosing our team and technology.”

Several aspects of the HIV/Facebook study are to be published in peer-reviewed journals.