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Recommendations: Stigma and HIV Prevention

March 2001

Stigma enables people to believe they are not at risk for HIV. People who express stigmatizing attitudes about HIV often have retained misinformation about the transmission of HIV. While blatant stigma towards people living with HIV has declined in recent years, stigma still impacts HIV prevention efforts.

Recent surveys have demonstrated that people still believe that HIV can be transmitted by casual contact. 40% of people surveyed believed that sharing a drinking glass with a person living with HIV could put them at risk for HIV infection. 25-30% of people surveyed would be uncomfortable sending their child to school with children living with AIDS. Almost 20% of people surveyed believe that people who were exposed to AIDS through sex or drug use got what they deserved.

Stigma can be expressed at the instrumental and symbolic levels. Instrumental stigma is expressed through an individual's concern about his or her risks of contracting HIV through casual contact with people living with HIV/AIDS. Symbolic stigma is a vehicle for expressing religious, political, or other attitudes and values through one's perception of people living with HIV/AIDS. Stigma is closely associated with homophobia.

It is important to highlight the role of stigma in HIV prevention. Stigma is an important component of both individual and community-level responses to HIV prevention messages. An exploration of stigma and its effects should encourage the development of more effective HIV prevention messages. HIV prevention messages must counteract the phenomenon in which people disassociate their own personal behaviors with the risk of contracting HIV. The impact of stigma on women and communities of color has not been fully explored and requires additional research.

The following list of recommendations is a summary of Stigma: Breaking through the Misinformation, a forum convened on January 26, 2001, by AIDS Action in cooperation with the Centers for Disease Control and Prevention.


Develop a Greater Understanding of Stigma and Its Relationship to Homophobia

People who are homophobic are more likely to express stigma towards people living with HIV/AIDS. Stigma can also be closely related to racism, classism, ageism, and gender-based prejudices. Confronting homophobia is a critical step in addressing and reducing stigma.


Work within a Cultural Framework to Address Stigma

All cultures have value systems that may conflict with some components of HIV prevention. HIV prevention is by its very nature explicit about sexual activity and drug use. Stigma needs to be addressed at the community level in order to minimize its impact on HIV prevention services. Rather than rejecting cultural values, HIV prevention providers should focus on the expression of those attitudes and encourage positive, culturally-appropriate messages about HIV prevention. For example, HIV prevention providers can encourage those voices within the community that are striving to create positive, non-stigmatizing messages. Or facilitate collaboration between communities that are seeking to mobilize a non-stigmatized response to the AIDS epidemic. While it is critical to challenge cultural norms that encourage stigma, wholesale rejection of cultural norms is not likely to be a successful strategy.


Meet People in Their Communities to Provide HIV Prevention Services

HIV prevention providers have found that it is critical to locate HIV prevention programs within the targeted community, rather than offering services at a remote location. In order to identify participants for HIV prevention programs, one AIDS service organization has successfully conducted outreach in collaboration with local Parent-Teacher Associations and tenant associations. Once the target population has been identified, it is important that individuals who the community can relate to deliver the HIV prevention message. Only then can providers begin to address the diverse needs of their targeted population. Questions and concerns regarding HIV may be significantly less important to the community members than meeting their basic needs or exploring other issues.

Providing HIV prevention services within the community that meet the community's needs are particularly relevant to conducting HIV prevention with youth. Sex education in schools is an ideal time to discuss HIV prevention and education. In September 2000, a Kaiser Family Foundation study found that a majority of parents want their children to receive comprehensive sex education, including HIV prevention, in school from trained educators who are comfortable conducting age-appropriate discussions about sexual and risk-taking behavior. Community-based organizations can provide HIV prevention education and outreach to youth as well as assistance to parents who are seeking guidance in exploring these sensitive issues with their children.


Successful HIV Prevention Outreach May Not Even Mention AIDS

HIV prevention providers have found that HIV prevention is not the highest priority in the lives of the people they serve. It is important to meet the needs of the targeted population first. In various communities, from youth to African-American and Latina women, prevention providers have found that providing a safe space in the community for a discussion of meaningful issues can engender trust between HIV prevention providers and the community. After gaining that trust, HIV prevention providers can begin to discuss HIV transmission. HIV testing may be the last component of HIV prevention programs.


Normalize HIV Testing

There are various immunizations and screenings that are provided to individuals at their physician's offices. Why isn't HIV testing one of those screens? While there are significant issues with insurance coverage of HIV testing and confidentiality of test results, the normalization of HIV testing could increase the number of individuals living with HIV who know their status.


Target Prevention Messages at People Who Are HIV+ and HIV-

Diverse communities are responsive to very different HIV prevention messages. In order to reach different communities at risk for HIV, it is critical that a variety of HIV prevention messages are available. HIV prevention messages are most effective when they are ongoing and consistent, although they should vary in venue and presentation. Stigma also impacts people living with HIV/AIDS and may prevent them from seeking prevention services. The development of prevention messages for people living with HIV/AIDS must acknowledge AIDS stigma and promote non-stigmatizing images of people living with HIV/AIDS.


Increase Cultural and Media Exposure of People Living with HIV/AIDS

Exposure to the personal experiences of people living with HIV and AIDS can have a profound impact on individual and com-munity perceptions of HIV/AIDS. Similarly, media representation of people living with HIV/AIDS increases cultural exposure to AIDS and may reduce some of the stigma surrounding the disease. Both national and local media can provide opportunities for people living with HIV/AIDS to share their life experiences with a broader audience.


Increase Coordination Between Community-Based Organizations, Funders and HIV Prevention Providers

All of the recommendations discussed above are components of successful HIV prevention strategies that reduce stigma and reach communities in need. In order to combat stigma, it is important for all of the interested parties to work together to promote a greater understanding of, and exposure to, HIV/AIDS. While stigma is a product of broader social problems such as homophobia, illness, and ignorance, it is imperative to address stigma in HIV prevention immediately in order to limit the number of new HIV infections in this country.




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