Confidence in accessing HIV care and prevention services was highest among people who went to two sources for their HIV information: their primary care provider and the HIV media.

By contrast, that confidence dropped significantly if the respondent was bisexual or if their primary source of HIV information was family members. These are the findings of a cross-sectional survey of Black and Latino adults in Indiana, published in PLoS One.

Using a community-based participatory design, the study authors assembled a community advisory group to identify the issues most important to Black and Latino people living with or at risk for HIV. Members identified three issues: one, people couldn’t access primary care at all; two, people weren’t sure how to access HIV services; and three, people had a hard time accessing information about HIV treatment and prevention. This informed the design of a 37-question survey, validated by the advisory board, which researchers then implemented as a cross-sectional survey—a snapshot that represents people’s answers at one point in time.

Gregory Carter, PhD, RN, of the Indiana University School of Nursing Bloomington, and colleagues advertised the study in clinics, ethnic markets, community centers and libraries throughout Indiana. Participants received a $10 gift card for completing the survey and were asked to forward the online survey to family and friends. Because recruitment wasn’t systematic, the results may not represent Black and Latino adults in Indiana overall. Survey materials were available in English and Spanish.

In the end, 308 participants completed all 37 questions plus demographic and sexual identity questions—and passed a one-question test in the middle of the survey to weed out people who were not reading closely.

The majority of participants were Black (73%) and male (63%), and half (51%) identified as gay or bisexual. The survey did not offer people the opportunity to identify as transgender or another gender identity. Participants were primarily young—24% were ages 18 to 24, and 46% were 25 to 34. Eight people used the Spanish-language survey.

When the researchers classified the results by people with primary care providers versus those without and by sexual identity, they found that the 46 bisexual adults in the survey were half as confident as their gay peers that they could access services.

What’s more, having a primary care provider alone wasn’t what predisposed people to have good access to care and prevention. Yes, people who had access to primary care were seven times more confident that they could also access HIV care and prevention services. But it was the combination of having a primary care provider and turning to them as their primary source of HIV information that did it. People who turned to family members for HIV information, even if they had a primary care provider, were seven times less confident that they could get HIV care or prevention services if they needed them.

People who said they got their information from television and magazines were four times more confident they could access care as well, though these results were trending—meaning that they were not statistically significant.

“Future research exploring the content and context of the HIV information provided by family members is needed to better understand whether this results from medical misinformation being passed among family members or whether using family members as a primary source of HIV information is a sign of a larger distrust of the medical system,” wrote the study authors. “The latter could lead to a decreased level of comfort with accessing health services in general, and not just those related to HIV.”

Click here to read the full study.