Shared Values, Distinct Cultures: HIV Care for Latinos in the U.S.
In 2000, a full decade before predicted, Latinos became the largest minority group in the U.S. -- over 13% of the population. They include people of Mexican descent (66%), Central and South Americans (15%), Puerto Ricans (9%), Cubans (4%), and other Latinos (6%). Additionally, non-Spanish-speaking immigrants from Latin America include the Mixtec-Zapotec Indians from Mexico, Mayan Indians who speak Mayan, Paraguayans who speak Guarani, Ecuadoreans, Peruvians, and Bolivians who speak Quechua or Aymara, and Brazilians who speak Portuguese.
According to Kaiser Permanente, the historical, social, economic, and political differences between these groups often affect their health care experiences. Providers must avoid the stereotype of "the Latino patient" and base their treatment approach on specific medical needs and cultural background.
Even though no one "Latino culture" exists in the U.S., many values of people from these countries overlap. Shared cultural values include the following:
Among Latinos, both HIV and the behaviors associated with it are highly stigmatized. Latino gay men often carry enormous shame, a sense of isolation and loneliness, and the belief that they hurt their families by being gay. Latinos with HIV refer to HIV as "nuestra condicion," (our condition) and themselves as "pacientes como nosotros" (patients like us), instead of using the term "VIH" (HIV) or "pacientes que son positivos" (patients who are positive).
For example, during a recent workshop in New York City, one Latina who had been infected by her ex-husband said she could never again be in an intimate relationship, since once she disclosed her HIV status, "no one would want to be with me." A gay man in the group told her, "You just have to be honest and it will be fine. No one will fault you. You have nothing to be ashamed of. Your husband brought this into your house -- you're not like me, who lived a lifestyle looking for trouble." He repeatedly referred to his homosexuality as "mi problema" (my problem).
For Latinos with HIV, the decision to disclose is shrouded in feelings of fear, shame, and anticipated rejection, and is greatly influenced by familismo and simpatia. Familismo can offer people comfort and support, but can also be a source of great conflict, since simpatia means keeping family members free of shame and the burden of an HIV diagnosis. Withholding information about one's HIV status often leads to isolation, in direct conflict with the concept of familismo.
In many Spanish-speaking groups that I've led, disclosure was a prominent theme, focusing on family members, peers, and intimate partners. Some members had disclosed to everyone in their lives, while others vowed to keep their HIV status secret. One woman in her mid-40s had not disclosed to anyone except her health care provider and her grown daughter, who lived in South America. She expressed terror that her brother would discover her secret and would respond by throwing her out and forcing her mother to disown her. Since her mother was her only social support, the thought of losing her was devastating. Despite the closeness of their relationship, she dreaded the idea of burdening her with the pain of such information.
Many Latino men feel the need to prove their masculinity, and so may seek multiple partners and take risks. Machismo gives them the power to decide sexual and contraceptive behavior. Many times, Latinas, in accordance with marianismo, are often unable to demand that condoms are used. Research has found that, although many married Latinas saw themselves at risk for HIV because their husbands had multiple sexual partners, most had not used condoms, citing partner resistance as their primary reason.
In one HIV workshop in the Bronx, an HIV-positive heterosexual male said he was petrified of putting anyone at risk, especially after one of his children was born with HIV. That being said, he held strong feelings against the use of condoms, claiming they were "unnatural and no woman would want me to use one." Several women in the group said they had never used a condom before. One explained the idea had never crossed her mind, especially with her husband.
Belief in folk medicine is common among Latinos and is often used in addition to prescribed treatments. But the two models can conflict. In a group in Queens, one female talked about her longstanding difficulty adhering to her HIV meds. This baffled and frustrated her providers, since she maintained they had saved her life. The problem was that each morning she would take a mix of vitamins, juices, and herbal teas. But her HIV regimen called for taking the medications with food each morning. She said, "I can't take my medication because I'm just too full after taking all my vitamins." Her case manager helped her develop a schedule in which her HIV meds were a priority, but she could also take her herbal remedies.
This article was provided by ACRIA and GMHC. It is a part of the publication Achieve. Visit ACRIA's website and GMHC's website to find out more about their activities, publications and services.
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