A first-of-its-kind stigma research training institute, sponsored by the NIH Fogarty International Center, attracted scientists from around the globe in June 2021. The institute was co-led by UAB stigma researcher Janet Turan, Ph.D., and UAB physician-researcher Latesha Elopre, M.D., attended as a trainee.The COVID-19 pandemic has introduced millions of Americans to the malicious power of stigma. Stigma is anything that causes someone to lose social value or become discredited in others’ or their own eyes. Or, as one researcher put it: “Stigma is social death.”
In some parts of the country, failing to wear a mask will bring stigma. Elsewhere, you may lose social value by putting one on. Either way, the effect of other people's opinions on one's own health choices — and stress levels, and mental health — has rarely been more transparent.
The study of health-related stigma “really got its impetus around HIV,” says Janet Turan, Ph.D., professor in the School of Public Health and director of the UAB Sparkman Center for Global Health. In April 2020, Turan and another prominent researcher studying health-related stigma, Carmen Logie, Ph.D., of the University of Toronto, wrote an article outlining “lessons we can learn from HIV stigma research in the response to COVID,” Turan said. “We have seen again how people can be labeled, blamed and targeted — and how fears of being labeled can cause people not to disclose information on their COVID-related behaviors and status.”
The National Institutes of Health has recognized the value of stigma research with a significant boost in grant support in recent years. In the five years from 2015 to 2019, NIH-funded stigma projects rose 91%, to 224 projects from 117 over that span. And more investigators are interested in incorporating stigma research into their work, judging by response to the first-of-its-kind NIH Fogarty Stigma Research Training Institute in June 2021.
Dozens of young researchers from around the world, including UAB's own Latesha Elopre, M.D., assistant professor in the Division of Infectious Diseases, participated in the intensive program. Turan helped organize the institute as scientific co-chair for the two-week program. Her research partner and husband, Bulent Turan, Ph.D., associate professor in the Department of Psychology, served as a faculty member.
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How stigma hurts
- Research has shown that people living with HIV who report experiencing stigma and discrimination are more likely to experience depression and other mental disorders. They are less likely to be engaged in HIV therapy or, if they have started therapy, to adhere to medications. But HIV is not unique.
- People who smoke and develop symptoms of lung cancer may delay seeking medical care because of perceived stigma from anti-smoking messaging, researchers have found.
- And patients with mental illness, tuberculosis and other stigmatized conditions are often assigned to less-experienced health care providers or wait longer for treatment, other studies have shown.
A 'crash course' in stigma research
You don't need a microscope to measure a scowl, or a thermometer to gauge the chill in the room when someone breaks a social code. But how exactly do you measure the effects of stigma? Or decide where to intervene when patients are affected by multiple intersecting stigmas around a disease, occupation, identity and more?
"There is so much work that can be done to understand how to address stigmatizing policies and improve stigma around health care," said Latesha Elopre, M.D., an assistant professor in the Division of Infectious Diseases who has a master's degree in applied epidemiology. "There is so much work that can be done to understand how to address stigmatizing policies and improve stigma around health care," said Elopre, who has a master’s degree in applied epidemiology in addition to her medical degree. She already has an NIH grant focused on how stigma impacts the ability of young black gay bisexual men to access services such as pre-exposure prophylaxis — medicines that can prevent them from getting HIV. In interviews and surveys with 300 men, Elopre heard again and again “how they didn’t feel comfortable telling health care providers they were gay, and when they did disclose that it changed how they perceived they were receiving treatment,” she said. In her application to the institute, Elopre wrote, "I would love to learn more about metrics to measure stigma and development of multi-level stigma interventions.”
During the institute, “we learned what behavioral interventions have worked in the past, conceptual frameworks to understand stigma, at what points it is best to intervene and how to design better studies,” Elopre said. Trainees also learned where and how to apply for research funding and the latest qualitative and quantitative methodologies. "It was a crash course," Elopre said. "And it was very helpful."
The agenda also included time to network with other researchers. The 51 attendees hailed from Kenya, Ethiopia and seven other countries in Africa as well as Colombia, Kenya, Thailand, Nepal, Ukraine and Canada, along with trainees from more than a dozen universities and institutions in the United States. Their projects ranged from HIV and sickle cell disease to breast cancer, obesity, suicide prevention, tuberculosis and fistulas. “Ultimately, you need multidisciplinary teams to do this work,” Elopre said. “I got to meet people who have all these varied backgrounds and are potential collaborators.”
Innovative interventions
The seeds for the training institute were planted during the Science of Stigma Reduction workshop hosted by the Fogarty Center for Global Health Studies in 2017, which both Turans participated in. That workshop resulted in a series of papers in a special edition of the journal BMC Medicine on stigma research and global health published in 2019. "Another product of the workshop was the idea of doing this training institute to help trainees understand how to apply novel and cross-cutting stigma research methodologies," Janet Turan said.
"More and more, researchers realize that people have different identities and experiences, and if you don't really deal with all of those in an intervention, you are missing the whole person," said Janet Turan, Ph.D., professor in the School of Public Health and director of the UAB Sparkman Center for Global Health. Janet Turan and her research partner and husband, Bulent Turan, Ph.D., an associate professor in the Department of Psychology, are pioneers in developing conceptual frameworks to understand intersectional stigma and research methods to study it.
Trainees learned about innovative interventions such as FRESH — Finding Respect and Ending Stigma around HIV — a program originally developed in sub-Saharan Africa by one of Turan's mentors from the University of California San Francisco and applied by Turan with healthcare workers and people living with HIV in Birmingham. Now, Turan is working with School of Public Health faculty member Henna Budhwani, Ph.D., to adapt FRESH for stigmatized communities in the Dominican Republic. She also is starting a pilot study of breast cancer stigma in Kenya with Mansoor Saleh, M.D., a prominent oncologist and longtime professor in the Department of Medicine at UAB who recently relocated from Birmingham to Nairobi, Kenya to establish a department of hematology and oncology and cancer center at Aga Khan University.
"One of the most important tools for stigma reduction is interpersonal contact — actually getting people to see each other as human beings," Turan said. "The workshops we have done for health care settings have traditionally been in-person, intense experiences that bring people together for two or three days. The core strategy is empathy generation — just feeling what it is like being in someone else's shoes."
In-person workshops are necessarily limited in reach and labor-intensive, Turan notes. "We have to figure out virtual ways to do this," she said. "People are trying to mix virtual and in-person, having participants listen to personal stories and testimonials on a tablet on their own, for example, and then at some point bringing people together. The field is trying to figure out how we can reach more people while maintaining the power of interpersonal contact."
Stigma upon stigma
"Another area really on the forefront of stigma research is acknowledging the effects of intersecting stigmas," Turan said. A person living with HIV may experience stigma because of that diagnosis, but also because of their gender, race or economic situation, or their sexual and occupational identities, for example. "More and more, researchers realize that people have different identities and experiences, and if you don't really deal with all of those in an intervention, you are missing the whole person," Turan said. "I see a lot more focus on intersectional stigma in programs and interventions."
The Turans have been pioneers in developing conceptual frameworks to understand intersectional stigma and research methods to study it. "These intersectional stigmas are not simply additive," Janet Turan said. "You can't just add up scores on separate surveys to get an answer. Some researchers ask a series of questions about stigmatizing experiences and then say, 'Did this happen to you because of your HIV status? Or your race? Or your sexual orientation?' In our work we've preferred to ask more nuanced questions about experiences of different types of stigma, and then use complicated analytical methods to look at all of these in the same analysis."
In the end, "these are pathways that are intertwined and complex, which makes intersectional stigmas very challenging to study," Turan said. "But I think this is where the field is going."
