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Background and purpose. While there has been a decrease in the number of new HIV infections and AIDS-related deaths, HIV infection remains a pandemic that is devastating individuals, families, and the economies of high incidence countries. It is estimated that there were 36.9 million individuals living with HIV/AIDS at the end 2014. A majority of these individuals lived in middle or low income countries. It is recognized that addressing the HIV/AIDS pandemic requires complex interventions and societal changes. A major factor impeding the control of HIV/AIDS is the presence of the parallel pandemic of stigma and discrimination. Women and girls have suffered a disproportionate burden of HIV/AIDS including disabling stigma and discrimination. Often women suffer from multiple stigmas. This may be especially true among poor women in cultures where they are devalued. Indigenous Indian women in southern Mexico represent such a population. Yet, little is known about these women’s perceptions of HIV stigma and the consequences of such stigma. The purpose of this analysis was to examine perceived levels of stigma and related consequences among these indigenous women.
Methods: This data was collected as part of a larger study examining quality of life among 101 HIV+ women in southern Mexico attending an HIV clinic. Data were collected by face-to-face interviews in Spanish. Inclusion criteria to participate in the study were: 1) being HIV +, 2) spoke Spanish, 3) were greater than 16 years of age, and 4) gave informed consent. Stigma data was initially collected using a 13-item stigma scale. However, in the analysis 3 items were discarded due to focusing on issues such as concern about accessing healthcare and concern for receiving adequate treatment if their HIV+ status was know. These items seemed to be irrelevant since the participants were receiving HIV-related healthcare at a comprehensive HIV Clinic in which all medications and treatment were essentially free. In addition to the data collected using the Stigma Scale, women were asked to describe their experiences with stigma and more fully describe their fears if their HIV status was revealed. Descriptive statistics were used to analyze the women’s responses on the Stigma Scale and descriptions of stigma experiences.
Results:
Participants ranged from 17 to 63 years (x= 33.3 years). The majority of women lived in small mountain villages, were married or had been married (85%), had a primary school education (63.4%), and lived in families with a mean income of 921 pesos ($74) monthly. The number of children living with HIV/AIDS ranged from 0 to 3 with many women being diagnosed when they delivered a baby. Women traveled long distances to reach the HIV clinic which was the only HIV-specific clinic in the region. Stigma scores had a mean score of 25 out of a possible score of 40. Some women felt blamed for their illness (36.3%), felt that HIV was a punishment from God (39.2%), and felt compelled to move from their villages (16.7%).The majority of women reported being afraid they would lose their job or means of making a living (61.8%), being ashamed of their illness (55.9%), fearing that people would hurt their family (83.3%) and fearing their family would reject them (66.7%) if their HIV was known. In describing their experiences with stigma and discrimination, women reported being afraid of disclosing to their extended families, their communities, and in some cases to their husband and/or children. Women described their belief that if their village members learned they were HIV infected they would face violence or be forced out of the village to fend for themselves and their children. This takes on greater significance when realizing that many of the villages in which they lived were comprised of extended family that worked collaboratively to provide food and shelter to its members. Even when their husbands were the likely source of their HIV infection, some women did not disclose their HIV infection in fear that the husbands would blame them and abandon them and their children. Often women told others they had other illnesses as a cover for coming to the HIV/AIDS clinic.
Conclusion:
The current study reveals that stigma is a significant issue for indigenous women in rural Mexico that greatly influences their lives and ability to deal with their HIV/AIDS diagnosis. Women feared being abandoned by family and community, as well as being subjected to violence if they disclosed their HIV infection. Additionally, there was great concern that their families would be subjected to violence if their HIV/AIDS status was disclosed. Such stigma has the potential to impede treatment, prevention efforts, and the well-being of families. The results of this analysis demonstrates that similar to other poor ethnic minority people, indigenous women in southern Mexico face stigma that can be as debilitating as the physical symptoms of their disease. Understanding in which areas women reported fearing the greatest consequence of disclosure can provide a guide for healthcare providers and public health officials to focus their efforts on disseminating HIV-related knowledge and education, as well as design programs that both address HIV/AIDS stigma, facilitate women in keeping their diagnosis confidential, and assisting women in safely disclosing their HIV infection to appropriate family and community members.