The ACR is enhancing the program’s curriculum and creating a facilitator’s guide with up-to-date lupus information. Materials will be available in Spanish and English.
Ms. Ginés, whose graduate studies at Georgia State University focused on cultural and health barriers faced by Latinas, feels that many women in her community may ignore their symptoms because they are unaware of SLE.
“They may think, ‘This is something I just have to go through and live with,’” or draw from cultural traditions and try to take care of their disease with natural treatments, she says. She started a similar community health program in Atlanta in 1997 and moved to Houston in 2008, where she earned her credentials to train and certify community health workers in Texas.
This program’s goal is to motivate, inform, navigate and educate clients about health, she says. “I was promoting crucial services to navigate people through the health system for treatment of diabetes, HIV, breast cancer. I thought, why not lupus?”
She worked with the ACR’s CDC Grant Advisory Committee to create the lupus education curriculum aimed at fellow community health workers, which was evaluated and tested in focus groups throughout Texas. Some attendees at the sessions receive credits to help them maintain their states’ certifications.
Trust & the Health System
Latinos often mistrust the American medical system (e.g., due to a preference for natural remedies or, for some, their immigration status), so community health workers help navigate them through the process and reduce their stress, says Ms. Ginés.
“The impact of what we do in the community is crucial to make sure that people at risk for lupus are getting screened. No one in the Latino community really knew about lupus. They didn’t realize there was a name given to these symptoms. Once they say, ‘Okay, I have lupus,’ [they ask] ‘what do I do now?’” she says. “In our curriculum, we talk about how to communicate the right messages about lupus, how not to scare people and how to help clients talk about their disease with their families. People are concerned that their doctors are going to do all these tests. They may not understand why all these tests are crucial for diagnosis. These feelings are worse when someone really doesn’t understand the healthcare system.”
Lack of awareness of lupus among Latinos has a negative impact on disease outcomes, says Dr. Drenkard.
“This program also emphasizes lupus nephritis, a disease manifestation that disproportionately strikes Latinos and can lead to chronic renal failure and other poor outcomes, particularly when there are delays in its diagnosis and treatment,” she says. “The program also tackles lupus medications and healthy behaviors. Lupus is a very challenging disease. A patient may not have symptoms all the time, but then have a flare. In the Latino community, they may think they don’t need to take treatments when they’re not symptomatic and don’t want to take them due to the side effects.”
