Researchers to help LGBTQIA+ populations navigate barriers to health information

UofSC will recruit and provide specialized training for community health workers

Despite growing up in a small town in Costa Rica before the internet era, Kathia Valverde still had somewhere to turn for information when she began questioning her sexuality — her librarian, Carmen.

“She didn’t know what to tell me, but she said, ‘There’s a few books that maybe I can help you with,’” Valverde says.

Today, Valverde helps others get information — not as a librarian, but as an LGBTQIA+ community health worker. Health disparities are common in these populations, in part because discrimination makes health information harder to come by. Little research has been done on how community health workers like Valverde navigate these information inequities — nor are there many who serve LGBTQIA+ communities specifically. 

A $357,000 grant from the Institute of Museum and Library Services is changing that. Over the next two years, a team of researchers from the University of South Carolina’s School of Information Science and Arnold School of Public Health will collaborate to recruit, learn from and develop specialized training for LGBTQIA+ community health workers. The researchers will also explore how partnerships with medical librarians can help, opening the door for librarians to better serve communities where they are needed most.


Information barriers

Until it was overturned in 2020, a South Carolina law prohibited teachers from discussing LGBTQIA+ topics in public schools. Five states still have similar legislation on the books, making it harder for LGBTQIA+ students to get answers to questions about sexually transmitted diseases and other sexual health issues.

“It’s not that the communities are lacking that knowledge, it’s that it’s being withheld,” says Vanessa Kitzie, an assistant professor in the School of Information Science and the principal investigator on the study. “That’s why it’s an information science problem as well as a public health problem.”

Kitzie has researched the information practices of LGBTQIA+ populations, particularly the kinds of health questions community members have and the ways they navigate around information barriers to find answers. What she’s found is that some people become unofficial intermediaries between other community members and health care providers.

“They might have access to the medical professional, they might have found someone who is safe and affirming of their identity, they might have the resources to go and see that person, but other people in their community don’t for a variety of reasons – maybe they don’t have insurance, or they’re not out or they don’t feel safe going to medical providers who are available to them in their area,” she says. “That’s when we started to think about community health workers.”

Community health workers are trusted members of their communities — think barbers, business owners or faith leaders — who serve as a bridge between their communities and health and social resources. They are particularly effective in populations where factors such as perceived discrimination or cultural differences can impact access to critical health services.

The Arnold School of Public Health’s Center for Community Health Alignment was a natural partner for the study. Launched in 2019, the center trains community health workers and provides other services, including technical assistance and studies measuring the impact community health workers have in the communities they serve.

The team is developing customized training based on insight from 10 to 15 LGBTQIA+ community health worker recruits. Once the training begins, medical librarians will be brought in to collaborate with the participants to create information resources that can be taken back to their communities. The project will culminate with a forum in which trainees will be able to share their resources with health professionals and even connect about job opportunities.

“There’s a gap in the literature and practice related to community health workers who are working specifically with LGBTQIA+ communities,” says Julie Smithwick, director for the Center for Community Health Alignment. “So we’re excited to inform the national movement and perhaps create a specialty curriculum that could expand this work to LGBTQIA+ communities all over the country that need it.”


Bringing trust

Valverde has long worked as a reproductive health educator in South Carolina’s Latinx communities through her work with PASOs, a public health partnership with the Arnold School. But when people began turning to her with LGBTQ-specific questions, including where to find transgender health resources, she realized that she was in a position to do even more.

“Community health workers bring trust,” Valverde says. “They trust us because we become not a personal friend, but we become somebody that they really trust, and once you start talking about something, then you hear the needs that everybody has.”

And librarians are trusted, too. A Pew Research Center survey from 2016 found that nearly 80 percent of adults believe that public libraries help them find trustworthy and reliable information. The center also found that 40 percent of American adults trust librarians “a lot,” more than double the figures for news organizations or the government.

But few community health workers realize they can turn to librarians for help. What’s more, most are unaware that medical librarians — professionals who specialize in finding health information — even exist.

“I doubt that many of the community health workers we work with would think about having a liaison in a library,” Smithwick says. “A library is where they might tell families to go get books for their children, but it’s not typically where they would say, ‘Oh, and there’s a safe place to go and get health information and help you navigate systems and understand what’s going on and get resources.’ There’s a real opportunity here to expand our work together.”

In addition to increasing the number of community health workers serving LGBTQIA+ communities, the team is hopeful that the project will encourage more collaboration between community health workers and librarians.

“They can work together to tag-team,” Smithwick says. “And they can really reach some populations that are shut out of a lot of places.”

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