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:
- Familismo refers to the significance of family, the primary unit within Latino culture. It includes attachment to the family, strong feelings of familial loyalty, and the obligation to support the family emotionally and materially. Traditionally, Latino families believe that personal issues, including health, should be handled within the family and that health care decisions should be made with family involvement.
- Collectivism -- close, nurturing, and supportive interpersonal relationships are valued in most Latino cultures over individualism, which is more prominent in U.S. culture. Latinos tend to think of the collective well-being over individual needs.
- Simpatia is the desire to maintain harmony, politeness, and respect in relationships. It can be applied to relationships within and outside the family, including doctor-patient relationships.
- Personalismo highlights Latinos' desire for intimate, personal relationships and individualized attention. It is important in health care settings.
- Folk Medicine uses folk healers (curanderos, santeros) and natural or herbal remedies, and may attribute symptoms to nonphysical causes, including both psychosocial and supernatural ones. Latinos may use folk medicine to supplement standard medicine.
- Machismo reflects the male dominant role and is deeply entrenched in Latino culture. On the positive side, it promotes a man's dedication to his family's honor and welfare (also known as "caballerismo"). But it can also lead to aggression, the subordination of women, and idolization of their reproductive and nurturing capacities, along with rejection of homosexuality.
- Marianismo -- the traditional Latina mother and wife is expected to be submissive and take orders from her husband. She feels she should stand behind him whatever he decides, even if she disagrees.
- Language is the primary means by which a culture transmits beliefs, values, and norms. For many Latinos in the U.S., language inhibits access to services and is a barrier to knowledge about medical conditions, especially for those who do not speak any English.
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.
Many times, Latino patients and caregivers seek a friendly and warm approach to care. Simpatia guides Latinos' desire to maintain patient-provider relationships that are rooted in respect and politeness. Often, this results in the feeling that they cannot ask questions or cast doubt on a health care provider's opinions.
In a group in Brooklyn, a Latino man with HIV told of going to his doctor with cold symptoms. The doctor recommended he go to the local pharmacy and just buy an over-the-counter cold remedy. But at the pharmacy, he was frustrated that his doctor had not written down exactly which medicine to buy. "There are so many different medicines. How am I supposed to know which will interact with my other meds? He just should have told me what I needed." He left the store without any medicine. Not wanting to question his doctor's orders or seem disrespectful, he never discussed it with his doctor.
A limited ability to speak English can prevent Latinos from seeking care to the same degree that a lack of health insurance can. In addition, English-speaking Latinos seek more preventive services than those who do not speak English. The lack of Latino health care providers may keep away Latinos who prefer to have providers who speak their language and share their culture. Some facilities have bilingual staff and interpreters, but without appropriate training on interpretation techniques and medical terminology, miscommunication can lead to medical errors. Family members, especially children, and untrained staff should not be used as interpreters when relaying sensitive medical information such as HIV test results. Regional Spanish translation is necessary to accommodate for differences in terminology.
The reading level of materials for Latinos must also be checked for each target audience. Latinos face enormous educational barriers and many have literacy problems. Without attention to literacy level in both Spanish and English, HIV materials will be of little or no use to a large percentage of Latinos.
Networking with Spanish-language radio and television stations has been an effective way of communicating important prevention information to Latino communities. In order to maximize exposure to culturally appropriate HIV prevention education, health care organizations should attempt to reach households where Spanish or an indigenous language is the only language spoken.
Latinos are the largest group of uninsured and underinsured people in the U.S. and are twice as likely to lack health insurance as the overall U.S. population. These rates have remained high due to immigration status, economic barriers, educational status, and employers who do not offer benefits to low-wage-earning Latinos. According to a 2011 Kaiser Family Foundation study, Latinos are more likely than whites to obtain health care through public clinics or emergency rooms, and to lack a regular source of health care. This may explain why Latinos are likely to learn their HIV status later in the disease process than whites.
The lack of culturally appropriate health care, little targeted HIV education, economic difficulties, fear of deportation, and a perceived low HIV risk combine to leave Latinos at high risk of HIV. Although the time between untreated HIV infection to an AIDS diagnosis is generally agreed to be 10 to 12 years, 65% of Latinos are diagnosed with AIDS within one year of their HIV diagnosis, meaning they have been unknowingly living with HIV for many years. They also have lower CD4 cell counts and higher viral loads when first tested for HIV.
Since HIV has long been associated with gay men and injection drug users, health care providers are less likely to recommend HIV testing to married Latinas, who make up an increasing share of women with AIDS. One way to encourage HIV testing among Latinos is to frame it as a prevention method that will benefit not only the patient but the entire family. Slogans such as "Protege tu familia: Hazte la prueba" or "Protect your family: Get tested" can be strong motivators for Latinos who do not identify with groups they feel are at risk for HIV.
To communicate with patients from different cultures, providers must be able to respond to their cultural expectations. So, in addition to collecting information on a patient's health problems, every provider should ask about a patient's cultural background. In The Latino Patient, Nilda Chong proposes using the GREET model when working with Latinos:
R easons for Immigrating
E xtended or Nuclear Family
E thnic Behavior
T ime in the U.S.
This model provides an opportunity to collect cultural information while demonstrating interest in the lives of their Latino patients, establishing confianza (trust).
Health care providers should remember that Latinos are diverse. They must not stereotype but rather treat each Latino patient as unique, with the respect each deserves. The process of becoming culturally competent is a continual learning process, and each interaction is an opportunity for learning.
According to the National Minority AIDS Education and Training Center, providers can offer culturally sensitive care to Latinos with HIV if they:
- Have a good understanding of their own cultural beliefs and values.
- Understand the nuances of different Latino communities.
- Know the sociopolitical influences and barriers to care that various Latino communities face.
- Develop the skills and knowledge needed to work with diverse groups of Latinos.
Providers must remain mindful of the many factors that contribute to HIV risk among Latinos and the impact that cultural and gender expectations have. The HIV epidemic among Latinos presents important challenges to community leaders, patients, health care providers, policymakers, researchers, and public health officials. A holistic approach to address HIV is extremely important if we are to reduce HIV and treatment differences among Latinos, and improve health care and health status for all.
Luis Scaccabarrozzi is Director of HIV Health Literacy Programs at ACRIA.