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NCLR/CSULB Latino Center Completes Final Phase of Project Aimed at Removing Stigma of HIV/AIDS in Latino Community

It was a busy summer for officials at the National Council of La Raza/Cal State Long Beach (NCLR/CSULB) Center for Latino Community Health, Evaluation and Leadership Training as they completed the third and final phase of a project that was looking to help reduce the stigma associated with HIV/AIDS among Latinos in the United States.

Titled “Salud es Cultura: ¡Protegéte!” or “Health is Culture: Protect Yourself,” the project was funded by a $125,000 grant from the Academy for Educational Development and the Ford Foundation. Its third and final phase — the dissemination phase — consisted of organizing five regional trainings for more than 100 community health workers throughout the United States.

The trainings were held in Washington, D.C., New York City, Portland and San Ysidro, and the last was hosted at Cal State Long Beach, where the NCLR/CSULB Latino Center trained 25 “promotores” (community health educators) to work with the Los Angeles Latino community on reducing the stigma associated with HIV/AIDS.

“This project was used to develop and strengthen prevention and outreach tools and programs directed at Latino communities with an emphasis on culturally and linguistically appropriate HIV prevention activities,” explained Britt Rios-Ellis, a professor of health science and principal investigator for the project.

Rios-Ellis said the statistics show that the Latino experience of HIV is markedly different than that of other racial/ethnic groups. “Latinos comprise 15.3 percent of the U.S. population,” she pointed out, “but 24.8 percent of HIV diagnoses and 19 percent of those living with AIDS are of Latino origin.”

Rios-Ellis also noted that Latinos are the only racial/ethnic group to experience a doubling of heterosexual infections since 2001. Additionally, Latinos are more likely than all other racial/ethnic groups to test late in the course of their HIV infections, to have a diagnosis of AIDS within one year of learning of their HIV infection, and to die within 18 months of their HIV diagnosis.

“Our hope was to provide promotores throughout the country with the training and curricular kit needed to eradicate the stigmas associated with HIV and sexual risk context that exists in Latino communities by establishing family-based HIV/AIDS education and outreach based on community participatory research methodology,” Rios-Ellis said.

Organizers were hoping to have a diverse group of promotores representing a wide variety of Latino community based organizations, and that’s what they got. The promotores went through a full eight-hour day of training, which was free and conducted in both English and Spanish.

“They (the promotores) come from all over. In New York, we had 11 organizations represented in our training session; in Washington, D.C., we had five organizations; in Portland we had four; and in San Ysidro, we had three organizations,” Rios-Ellis noted. “The Cal State Long Beach training session attracted five different groups, including Planned Parenthood and Latino Health Access.”

Gabriela Diaz, a UCI medical student who is also completing her MPH at CSULB, served as the project coordinator. “Coordinating this project has been a wonderful experience. I have had the opportunity to travel throughout the U.S., work with many community-based organizations, and help develop a Latino-focused curriculum that is preventing HIV within my community.

“Our original goal was to educate 16 organizations, and we nearly doubled that,” she added.“And, we’ve already received requests to do the training in Florida, Chicago and Texas and at other sites in New York, Oregon and California.”

The reason for such a positive response is the curriculum, which was developed and tested at three sites – The Wall Las Memorias in Los Angeles, San Ysidro Health Center’s CASA Services and Centro de Salud Familiar La Fe in El Paso, Texas. Rios-Ellis said, “The promotores, many of whom are HIV positive or have a family member who has HIV, have been an inspiration to work with throughout the project and have guided us with their sage first-hand knowledge and community-based context.”

The result of the testing was the production of a promotores tool kit, a briefcase-style box that contains a rotafolio (or flip chart); a CD with a PowerPoint version of the curriculum; pamphlets targeting Latino men, women, youth and families; and outreach cards targeting the aforementioned groups. All of the materials are culturally and linguistically appropriate and written within the context of the Latino communities’ needs.

“There is a grave lack of materials out there that are culturally and linguistically written within the context of HIV risk as it is experienced by Latino communities nationwide,” Rios-Ellis explained. “This curriculum is not only appropriate, it is also community contextualized because we used community participatory research methodology to develop it. The promotores were very involved in the development of all materials, including those we used to evaluate our effectiveness.

“What this curriculum does is it tackles HIV within the context of cultural pride and valuing cultural characteristics that make the Latino community strong. So, we’re not approaching HIV from a standpoint of fear or taboo. We’re approaching HIV from a standpoint that really allows us to use cultural values within the Latino community, teach people about HIV and then create support, leadership, and outreach through the promotores,” she continued. “Our formative research demonstrated that the word stigma was problematic in that it was associated with ‘estigmata’ or ‘marks of God.’ The promotores were rightfully concerned that HIV/AIDS may then be associated with punishment from God, which could invoke the exact opposite of what we would hope to accomplish through an HIV/AIDS anti-stigma program.

“We also found that there was a considerable amount of stigma associated with just being Latino in the U.S. today, largely due to the media’s overwhelmingly negative portrayal of Latinos and the political persecution occurring as a result of the immigration debate. So much of HIV/AIDS education is shrouded in fear-based messaging. It’s hard to help people shift knowledge and behavior when they are feeling negatively about themselves to begin with. To counter the negativity we incorporated a cultural pride component into our HIV prevention curriculum. In the course of the educational session, by the time we get to HIV/AIDS facts and prevention, our participants feel enthusiastic and proud of their heritage and are ready to tackle HIV prevention because they realize that HIV is something that is hurting their communities and families.”

Rios-Ellis said the “Salud es Cultura: ¡Protegéte!” project has been one of the most rewarding projects she has ever been involved with, especially after seeing how well the curriculum resonated with the groups of promotores, including one group whose members were all HIV positive themselves.

“I think this project has been enormously successful. The feedback has been extremely positive, and the promotores have been so well receiving of the work,” Rios-Ellis pointed out. “Across the country we are consistently hearing the need for promotores kits to prevent HIV infection and we are thrilled that the promotores believe that our kit is meeting their outreach and education needs. We are hearing again and again that this is the first time they are seeing a curriculum that is this well-developed and in tune with the Latino community.

“We have been told by our funders that continuation is highly probable and we are excited about the chance to further our work,” she added. “Preliminary data analyses are demonstrating that participants are leaving our sessions stating that they are more likely to test for HIV, more likely to prevent HIV, and more likely to discuss HIV risk with their partners, friends and family members.”

The Academy for Educational Development is a nonprofit organization working globally to improve education, health, civil society and economic development — the foundation of thriving societies. Its mission is to make a positive difference in people’s lives by working in partnership to create and implement innovative solutions to critical social and economic problems.