UTEP Researcher Studies TB Stigma
By Laura L. Acosta
Tuberculosis (TB) is still one of the most deadly diseases, with nearly one-third of the world’s population infected. According to the Centers for Disease Control and Prevention (CDC), TB is particularly dangerous for persons infected with HIV.
“TB loves the company of other conditions,” said Eva Moya, Ph.D., an assistant professor of social work at The University of Texas at El Paso’s College of Health Sciences. “The best friends of TB are diabetes, HIV and AIDS.”
Moya has conducted extensive research to combat the stigma associated with TB that can prevent sufferers living along the U.S.-Mexico border from seeking proper care and diagnosis.
In her study, “Tuberculosis and TB Related Stigma: Impacts on Health-Seeking Behaviors and Access in Ciudad Juárez, Mexico and El Paso, Texas,” Moya found that a stigma adversely affects persons infected with TB. The disease influences the way they interact with family, health care workers and the public. Further adding to the stigma of TB is the complication of another disease, such as HIV.
December has been designated AIDS Awareness Month to raise a greater understanding about AIDS and HIV. According to the CDC, people infected with HIV are at very high risk for active TB disease because HIV can severely weaken the immune system. TB is the leading killer of people infected with HIV.
“If you have a co-morbidity of TB and HIV, you certainly are much more prone and susceptible to having two types of stigmas,” Moya said. “Having the two conditions is sort of like twice the burden and the vulnerability of being stigmatized.”
Moya’s study was three-fold. In the first study she conducted in-depth interviews with 30 people undergoing TB treatment in El Paso and Juárez. She looked at their quality of life and their experiences of being treated as outcasts.
“We have seen cases where family members, as much as they love the person, they are afraid of the person. So people begin to push people out of their homes, out of their lives and out of their network,” Loya said. “We have heard of people who have actually had to tell lies about their condition because they feel that if they disclose their disease, (other people) are not going to be accepting of them.”
The second study involved administering the first Spanish version of the TB and HIV subscales that were developed to measure the TB and HIV/AIDS stigma in southern Thailand. With the permission of the authors, Moya translated the subscales into Spanish and administered them to populations in five states throughout Mexico.
The first of two subscales – one for TB and one for HIV - looked at how the community perceives a person who is diagnosed with either disease. The other subscale asked the person how they felt about the disease. The subscales for TB and HIV were administered separately.
After standardizing the scores, Moya was able to tell whether the people who were interviewed perceived a stigma to be present or not present, she said.
The scales have since been integrated into the first National Knowledge Attitude and Practice Study on TB in Mexico.
“It’s sort of what the researcher dreams of,” Moya said. “You wonder whether the findings are going to be used and not only referenced. So I’m happy to say that the tools, once they were validated, were integrated into this study.”
In the third study, Moya interviewed 10 people living in El Paso and Juárez who participated in a Photovoice project. Photovoice is a method where people who are affected by specific conditions such TB used disposable cameras to document their quality of life. Out of the 10 participants, four were living with TB and HIV.
In the photovoice project, titled “Voices and Images of Tuberculosis,” some of the photos illustrate the darkness or isolation that some patients felt when first diagnosed with TB. The photos then begin to exhibit brightness as the patients begin to feel better because of their medications and treatments.
The project also served as a way for patients to gain power over their illnesses and become activists. Moya said one participant who was shy about her HIV-positive status used her Photovoice work to begin speaking publicly about HIV and TB prevention.
“They used the negative side of the stigma and turned it around positively, which means that for them, living with TB and living with HIV and other conditions like diabetes was no longer a stigma,” she said.
Images from the “Voices and Images of Tuberculosis” Photovoice project are on display in the lobby of UTEP’s College of Health Sciences/School of Nursing.
Moya and Rachel Orduño, a graduate student from the Department of Social Work, received the 2010 Global Award for Innovation in Tuberculosis Advocacy and Social Mobilization. The award was presented to the TB Photovoice project at the Tuberculosis Survival Project 2010 Conference in Berlin, Germany.