Maria, a Latina lesbian with HIV, was having difficulty dealing with her troubled grandchild and felt ashamed at her inability to care for her. She began missing medical appointments in her effort to deal with the problem.
Fortunately, her therapist was familiar with the importance of family in the Latino culture and knew that it was crucial to address Maria's feelings of responsibility to her family and as well as her own health. Discussing the situation led Maria to understand that she couldn't care for her granddaughter without also caring for herself.
Maria's case is not uncommon. Many people with HIV find it a struggle to communicate cultural concerns with their health care providers, case managers or mental health professionals. These concerns can influence how they think about illness and respond to it, as well as how their community and support systems react. Culture may also shape how they interact with their providers, what information is provided, and how it is communicated.
Studies have shown that ethnicity, race and culture can affect access to health care and health outcomes. Even when insurance status and income are taken into account, minorities receive a lower quality of care and are less likely to be offered new and innovative treatments. Given the diversity of those living with HIV, it is clear that the issue of culture and care needs to be addressed.
HIV-positive people of color also experience discrimination in HIV care. While one study found the majority felt discriminated against only part of the time, any perceived discrimination has been shown to be related to lower medication adherence, higher depressive symptoms, and less health care satisfaction.
Sexual orientation and gender can also lead to disparities in HIV care. Many gays and lesbians do not feel comfortable disclosing their sexuality to their health care provider, which can hinder both HIV prevention and care. Those who have had negative experiences when discussing their sexuality with a provider may be reluctant to do so in the future. A 2004 study found that 24% of gays and lesbians had deliberately withheld information about their sexual practices from their doctor, compared to only 6% of heterosexuals.
People with HIV may also find disparities in mental health care. The majority of mental health treatments have been developed for white middle-class patients, even though they are used in a much more diverse population. And individuals often face more than one health disparity since many people with HIV are part of multiple marginalized groups.
Health care professionals need to be prepared for the increasingly diverse group of people living with HIV. Cultural competency supports treating the whole patient and not just the symptoms, by examining the entire context of what is affecting a patient. Health care professionals must also understand that they themselves are part of a culture and need to be aware of their own biases. They should research and utilize available resources, including patients themselves, to provide a higher standard of care.
For example, when working with Latinos it is important to understand the concept of familismo -- the primacy of the family unit, including the extended family. African-Americans have a long history of the church as a crucial source of social support, and there may be distrust towards the medical community based on years of misuse in clinical studies. As a result, half as many African-Americans use experimental HIV treatments as whites. When working with Asians and Native Americans, the importance of respecting elders as gatekeepers to the community is important. Gender roles and the significance of authority figures also vary by culture.
Health care professionals will often have cross-cultural encounters. People who are treated by providers who share their ethnic/cultural background often have better health outcomes, but 40% of people with HIV are African-American, compared to only 3% of physicians. So it is important that providers not form stereotypes around a client's culture. For example, a Puerto Rican raised primarily in New York City may have very little in common with a Mexican immigrant. A third-generation Asian-American will most likely not have the same cultural values as recent Asian immigrants.
Cultural competency means gaining knowledge of a person's culture while respecting individual differences. Discussing culture issues may reveal conflicts between a patient's values, standard HIV care, and that of the culture in which they were raised. Clients need to be asked about their cultural values and how they may influence living with HIV. Providers should be patient and understand that the client may have faced discrimination in the health care system and may view it with suspicion. The feeling that a provider is not sensitive to cultural needs is associated with being less likely to return for follow up care. Studies have also shown that when health care providers are educated on cultural competency, they become more aware of barriers that may exist in maintaining proper health care.
Cultural competency is particularly important in HIV care, which involves very sensitive subjects like sexuality and stigma. HIV-related stigma is widespread in the U.S., but in certain cultures HIV risk behaviors and an HIV diagnosis carry even more stigma. This can cause people to avoid disclosing their HIV status for fear it will shame their family or that they will be turned away at their place of worship.
Areas to be considered in cultural competency programs include age, sex, race/ethnicity, country of origin, religion, sexual orientation, disability status, education level, socioeconomic status, gender identity and languages spoken. Courses should focus on the fact that health views can be linked to culture, that unfamiliar client behavior should not be judged, and that people have different perspectives on health care, including how they ask for help.
Providers may not be able to address every cultural issue that is presented to them but they can listen to the information clients provide and explore the attitudes they hold towards their HIV diagnosis. Providers should understand that individuals often feel a part of more than one group and may embrace different pieces of each.
Our health care system needs to respond to the growing diversity of the U.S. and of people with HIV. A culturally competent approach will help providers better understand HIV stigma, medication adherence, and family, disclosure and communication issues. Organizations can also implement cultural competency programs and policies and information throughout the practice. n
Liz Seidel is a research intern at ACRIA and is completing her MSW at Fordham University.
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