The internalization of stigma related to HIV is a complex phenomenon that affects individuals, families, and communities worldwide. This process, also known as internal stigma or felt stigma, occurs when individuals internalize shame, blame, hopelessness, guilt, and fear of discrimination associated with being HIV-positive. Internal stigma can have a profound impact on HIV prevention, treatment, and care, as individuals may avoid seeking medical attention, disclose their status, or adhere to treatment regimens due to feelings of shame and fear of judgment.
Research has shown that internal stigma is shaped by previous experiences of shame and blame, and individuals who experience high levels of internal stigma often have a recent diagnosis, lower status, and are discriminated against. The process of internalizing stigma is complex, and individuals may go through various stages in processing internalized stigma, including denial, anger, bargaining, depression, and acceptance. However, most individuals will reach a point of acceptance, having worked through some of their negative feelings and highlighted their positive attributes.
Internal stigma is intrinsically linked with external stigma, as the fear of judgment or discrimination from others can profoundly influence the way individuals living with HIV view themselves and cope with their HIV status. The process of stigmatizing a person may involve the following steps: noting and labeling differences, giving a negative attribute to these differences, making a distinction between “us” and “them,” and seeing the person with the negative attribute as others. This process can lead to the production and reproduction of social structures of power, hierarchy, class, and exclusion, and the transformation of difference into inequality.
Stigma serves various social and psychological functions, including distancing individuals or groups from the fear of infection, maintaining social order by marginalizing the “undesirable,” reinforcing social norms around fidelity and family, and being a strategy in resource-poor countries for families and communities to exclude those who are perceived as a drain on limited resources. Stigma can be seen as instrumental, arising from utilitarian self-interest, or symbolic, arising from a value-based ideology.
The POLICY Project, a USAID-funded initiative, has made measuring and mitigating internal stigma a cornerstone of its stigma and discrimination work. The project has embarked on two initiatives, Siyam’kela and Mo Kexteya, to study HIV-related stigma and develop guidelines for mitigating its impact in various sectors. These initiatives focus on faith-based organizations and communities, government workplaces, and the relationship between media and people living with HIV in South Africa, and public policy and legislation, healthcare settings, people living with HIV, and the media in Mexico.
The Siyam’kela Project, which means “we are accepting” or “together we stand” in the Nguni language, emphasizes unity and compassion, and focuses on people living with HIV and the media, government workplaces, and faith-based organizations. The project used a qualitative and participatory research approach, gathering perceptions and experiences from 182 participants through focus groups, in-depth interviews, and literature reviews. The Mo Kexteya Project, which means “to appear” or “to change” in the Náhuatl language, emphasizes commonalities and increased visibility, and focuses on people living with HIV and the media, government laws and policy, healthcare sector, and workplaces and labor unions.
Both projects are in Phase II, the implementation phase, where stigma and discrimination mitigation strategies are being conducted in specific sectors. This phase allows for refinement of the indicators and promising approaches identified during the research phase, evaluation of the effectiveness of the approaches used, and creation of replicable best practices and models for reducing the impact of stigma and discrimination on the uptake of prevention, treatment, and care services.