In this Office of Minority Health video, Guy Anthony, president & CEO of Black Gifted and Whole, community mobilizer and ARTivist, discusses becoming HIV-positive, being a young black gay man in America, and mobilizing youth in the digital age.
According to the Center for AIDS Prevention Studies (CAPS) at the University of California San Francisco, "HIV/AIDS-related stigma is a complex concept that refers to prejudice, discounting, discrediting and discrimination directed at persons perceived to have AIDS or HIV, as well as their partners, friends, families and communities." This devaluation of people living or perceived to be living with HIV/AIDS, and of those around them, can negatively impact adolescent HIV prevention and treatment.
It is important to note that both HIV-positive and HIV-negative adolescents may experience multiple intertwining layers of stigma related to other aspects of their identities and social groups. For example, young men who have sex with men (MSM); lesbian, gay, bisexual, transgender, and queer (LGBTQ) youth; and racial/ethnic minorities face stigma regardless of their HIV status. Individuals may also face stigma related to mental health, substance use, and socioeconomic status.
To understand the many ways that HIV stigma originates and influences adolescent health, it is helpful to consider the social-ecological model of health. This framework can be used to outline how stigma is expressed at the following levels: individual, interpersonal, institutional, community, and policy.
HIV stigma at the individual level is often a response to social norms that marginalize people living with HIV.
Internalized stigma. Adolescents may feel shame, embarrassment, and/or guilt related to their HIV status, gender identity, or sexuality.
- Fear and discomfort of disclosure. Youth may worry that people around them will notice their HIV medications, ask about evident side effects, or see them accessing HIV or sexual health clinics. In addition, sometimes when a young person shares his/her HIV status, it is assumed to be related to a behavior (same-sex contact, intravenous drug use) that may also be stigmatized. This can add to the youth's fear and discomfort of disclosing HIV status.
- Desire to postpone lifelong identification with HIV. Adolescents feeling this desire may avoid testing, neglect treatment, or disengage in care. This can have an impact at multiple points of the HIV Care Continuum.
- Low self-esteem and depressive symptoms. Stigma and its related stress may lead to feelings of low self-worth and harm the mental health along with overall well-being of adolescents.
Stigma may be present in adolescents' relationships with partners, friends, family, and community members.
Judgments from others related to disclosure or status. Family, friends, partners, and others (teachers, employers, colleagues, community members) may express beliefs or use language that is stigmatizing. The bias may be explicit (the person is aware of their judgments) or implicit (the person may not be aware of their bias but it influences their actions).
- Partner rejection. Once youth share their status or discuss HIV with past or potential partners, they may face rejection or other negative reactions.
- Inadequate social support network. Peers and families may distance themselves from adolescents living or perceived to be living with HIV in order to avoid experiencing the same stigma they do. Youth could internalize this abandonment and avoid seeking support.
At this level, stigma originates in organizations and institutions and can impact adolescent health. Organizations and institutions include schools, youth-serving organizations, after-school programs, colleges and universities, workplaces, and clinical settings.
- Limited discussion around sexual health. Stigma can arise when providers, educators, program facilitators, employers, and other organizational leaders do not discuss sexual health with adolescents. This is a particular issue for LGBTQ youth who may not receive inclusive sex education.
- Negative attitudes or beliefs surrounding HIV. If people working at the institutional level have negative or uninformed attitudes and beliefs about HIV, it can manifest as stigma in their interactions with youth.
- Lack of culturally appropriate environments. Settings that do not take adolescents' culture and background into consideration can yield stigma that affects young people of color, LGBTQ youth, and MSM.
- Limited staff training. When an organization's staff are not well-equipped to serve diverse groups of youth, stigma can come into play.
- Uninformed policies and standard operating procedures. Institutions that have not considered and addressed how policies and procedures impact diverse groups of adolescents risk creating environments in which stigma can thrive.
Stigma at the community level can affect youth through social/cultural influences and availability of resources.
Cultural norms and traditions. Social stigma around being HIV-positive can be intensified by attention being further drawn to an adolescent's sexuality, gender identity, ethnicity, class, and culture. Traditional community norms, cultural/social standards, and gender roles can contribute to reinforcing stigma around HIV and leading youth to internalize it.
- Lack of HIV prevention services in broad health and community contexts. Many schools, businesses, detention facilities, churches, and other community organizations have not integrated discussion of HIV into their practices, a silence that can contribute to HIV stigma. Other organizations may touch on HIV and sexual health but not offer full services. This can lead to fewer HIV prevention services being made available to youth.
Laws and policies at the local, state, and federal levels can contribute to HIV stigma.
HIV stigma, incidence, and prevalence are associated with state policies related to discrimination and rights. Results from a National Alliance Of State & Territorial AIDS Directors (NASTAD)/National Coalition of STD Directors survey revealed higher levels of stigma in states without employee non-discrimination laws focused on sexual orientation and gender, in states without hate crimes laws, and in states not allowing for same-sex marriage or civil unions.
Youth HIV Facts
Strategies to Reduce Stigma
As stated in The 2016 National HIV/AIDS Strategy, "...working to end the stigma and discrimination experienced by people living with HIV is a critical component of curtailing the epidemic." In order to do this, a social-ecological approach can be used to address stigma at multiple levels. The following strategies are helpful in reducing stigma at each level of the model.
Self-esteem. Help build young people's self-esteem by using youth development principles and leadership training.
Knowledge and tools. Encourage youth to seek knowledge and tools to stay educated about HIV prevention, transmission, and care.
- Social support. Support from peers can protect against stigma.
- Peer and family acceptance. Promote the use of language regarding HIV that is appropriate, factual, and inoffensive.
- Education. Teach those connected with youth about HIV transmission, care, and testing is essential to reducing stigma.
- Overcoming implicit bias. Recognize how implicit bias can affect work with youth. Taking an implicit bias test related to sexuality can reveal if there is an inadvertent preference toward straight vs. LGBTQ youth.
- Awareness about stigma among health clinic staff. Measure HIV stigma in the institution. One way to do this is to use the Health Policy Project's Measuring HIV Stigma and Discrimination Among Health Facility Staff questionnaire. Another way is to assess stigma in the clinical setting by surveying patients, as suggested by the Dallas STD/HIV Prevention Training Center at UT Southwestern Medical Center and the Texas/Oklahoma AIDS Education & Training Center. After stigma is measured among staff, use the indicators to inform a stigma reduction plan.
- Education and skills-building. Institutions can support or offer staff continued education and/or training on HIV prevention and working with young MSM, people of color, and LGBTQ youth. This education should include diversity and confidentiality training, and could also include training on implicit bias.
- Routine HIV testing. Integrate regular HIV testing into standard care practices.
This toolkit from NASTAD includes descriptions of stigma and recommendations on how to reduce it among Black and Latino gay men.
- Collaboration between organizations to better serve adolescents. Identify Boys & Girls Clubs, other youth-serving organizations, and HIV testing facilities in the community. Collaborate with these community organizations to link youth to additional services and HIV testing. Mobile HIV testing units are a good way to offer testing and counseling onsite in community settings, and the presence of the testing vans can help destigmatize HIV.
- Stigma-reduction interventions implemented by health departments and community programs. Engage schools, businesses, detention facilities, churches, and other community organizations to work together to reduce stigma. Incorporating training on cultural competency and confidentiality for staff at these organizations, especially in rural areas, is important.
- Contact with and inclusion of HIV-positive people. Involve youth living with HIV in all stages of stigma reduction program development and implementation.
- Digital media and social marketing campaigns. Campaigns can be used to increase education and awareness by reaching a broad audience. MTV's "Look Different" campaign is an example of a public service announcement aimed at raising awareness about stigma and bias. Others include The Body's "#HIVStigmaOnBlast" storytelling campaign and the Banyan Tree Project social marketing campaign to stop HIV stigma in Asian American and Pacific Islander communities.
- Anti-discrimination policies. Encourage lawmakers to consider HIV stigma when deciding whether to support policies that could have an impact on adolescents living with HIV.
- Confidentiality laws. Ensure youth living with HIV are aware of their rights related to privacy. AIDS.gov's Information is Powerful Medicine campaign provides information and resources related to HIV and information privacy.