HIV-related Stigma: Adapting a Theoretical Framework for Use in India

Department of Medicine, Center for AIDS Prevention Studies, University of California, San Francisco, CA 94105, USA.
Social Science & Medicine (Impact Factor: 2.89). 08/2008; 67(8):1225-35. DOI: 10.1016/j.socscimed.2008.05.032
Source: PubMed


Stigma complicates the treatment of HIV worldwide. We examined whether a multi-component framework, initially consisting of enacted, felt normative, and internalized forms of individual stigma experiences, could be used to understand HIV-related stigma in Southern India. In Study 1, qualitative interviews with a convenience sample of 16 people living with HIV revealed instances of all three types of stigma. Experiences of discrimination (enacted stigma) were reported relatively infrequently. Rather, perceptions of high levels of stigma (felt normative stigma) motivated people to avoid disclosing their HIV status. These perceptions often were shaped by stories of discrimination against other HIV-infected individuals, which we adapted as an additional component of our framework (vicarious stigma). Participants also varied in their acceptance of HIV stigma as legitimate (internalized stigma). In Study 2, newly developed measures of the stigma components were administered in a survey to 229 people living with HIV. Findings suggested that enacted and vicarious stigma influenced felt normative stigma; that enacted, felt normative, and internalized stigma were associated with higher levels of depression; and that the associations of depression with felt normative and internalized forms of stigma were mediated by the use of coping strategies designed to avoid disclosure of one's HIV serostatus.

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    • "But over the longer-term, there are potential deleterious mental and physical health impacts. People who chronically hide their HIV-positive status are more likely to experience depression, cut off access to valuable support resources, and potentially delay needed care [16, 45, 46]. Our findings contribute to a complex field of study and serve to explain seemingly divergent trends. "
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    ABSTRACT: Background Stigma is a known barrier to HIV testing and care. Because access to antiretroviral therapy reduces overt illness and mortality, some scholars theorized that HIV-related stigma would decrease as treatment availability increased. However, the association between ART accessibility and stigma has not been as straightforward as originally predicted. Methods We conducted a “situational analysis”—a rapid, community-based qualitative assessment to inform a combination HIV prevention program in high prevalence communities. In the context of this community-based research, we conducted semi-structured interviews and focus groups with 684 individuals in four low-resource sub-districts in North West Province, South Africa. In addition to using this data to inform programming, we examined the impact of stigma on the uptake of services. Results Findings suggested that anticipated stigma remains a barrier to care. Although participants reported less enacted stigma, or hostility toward people living with HIV, they also felt that HIV remains synonymous with promiscuity and infidelity. Participants described community members taking steps to avoid being identified as HIV-positive, including avoiding healthcare facilities entirely, using traditional healers, or paying for private doctors. Such behaviors led to delays in testing and accessing care, and problems adhering to medications, especially for men and youth with no other health condition that could plausibly account for their utilization of medical services. Conclusions We conclude that providing access to ART alone will not end HIV-related stigma. Instead, individuals will remain hesitant to seek care as long as they fear that doing so will lead to prejudice and discrimination. It is critical to combat this trend by increasing cultural acceptance of being seropositive, integrating HIV care into general primary care and normalizing men and youths’ accessing health care.
    Full-text · Article · Dec 2015 · BMC Public Health
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    • "Stigma questionnaire A 17-item stigma questionnaire was administered to all caregivers, which asked caregivers to agree or disagree with a number of statements about their and their child's experiences with HIV stigma. The questionnaire was developed by investigators in this setting and informed by literature reviews conducted by other investigators (Earnshaw & Chaudoir, 2009;Steward et al., 2008). A 10-item stigma questionnaire was administered to children who indicated they knew their HIV status, as questions implied HIV infection. "
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    ABSTRACT: Knowledge of one’s own HIV status is essential for long-term disease management, but there are few data on how disclosure of HIV status to infected children and adolescents in sub-Saharan Africa is associated with clinical and psychosocial health outcomes. We conducted a detailed baseline assessment of the disclosure status, medication adherence, HIV stigma, depression, emotional and behavioral difficulties, and quality of life among a cohort of Kenyan children enrolled in an intervention study to promote disclosure of HIV status. Among 285 caregiver–child dyads enrolled in the study, children’s mean age was 12.3 years. Caregivers were more likely to report that the child knew his/her diagnosis (41%) compared to self-reported disclosure by children (31%). Caregivers of disclosed children reported significantly more positive views about disclosure compared to caregivers of non-disclosed children, who expressed fears of disclosure related to the child being too young to understand (75%), potential psychological trauma for the child (64%), and stigma and discrimination if the child told others (56%). Overall, the vast majority of children scored within normal ranges on screenings for behavioral and emotional difficulties, depression, and quality of life, and did not differ by whether or not the child knew his/her HIV status. A number of factors were associated with a child’s knowledge of his/her HIV diagnosis in multivariate regression, including older age (OR 1.8, 95% CI 1.5–2.1), better WHO disease stage (OR 2.5, 95% CI 1.4–4.4), and fewer reported caregiver-level adherence barriers (OR 1.9, 95% CI 1.1–3.4). While a minority of children in this cohort knew their HIV status and caregivers reported significant barriers to disclosure including fears about negative emotional impacts, we found that disclosure was not associated with worse psychosocial outcomes.
    Preview · Article · Nov 2015 · AIDS Care
    • "Typically this subjective awareness is assessed among persons with HIV and is sometimes termed " felt stigma " (Scambler and Hopkins, 1986) or " anticipated stigma " (what Link (1987) described as " expectations of rejection " ). However , anticipated stigma can also be assessed among persons in general population samples (irrespective of HIV serostatus) using parallel questions (Steward et al., 2008; Visser et al., 2008). The remaining three questions elicit respondents' willingness to interact with persons with HIV under hypothetical scenarios. "
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    ABSTRACT: HIV is highly stigmatized in sub-Saharan Africa. This is an important public health problem because HIV stigma has many adverse effects that threaten to undermine efforts to control the HIV epidemic. The implementation of a universal primary education policy in Uganda in 1997 provided us with a natural experiment to test the hypothesis that education is causally related to HIV stigma. For this analysis, we pooled publicly available, population-based data from the 2011 Uganda Demographic and Health Survey and the 2011 Uganda AIDS Indicator Survey. The primary outcomes of interest were negative attitudes toward persons with HIV, elicited using four questions about anticipated stigma and social distance. Standard least squares estimates suggested a statistically significant, negative association between years of schooling and HIV stigma (each P < 0.001, with t-statistics ranging from 4.9 to 14.7). We then used a natural experiment design, exploiting differences in birth cohort exposure to universal primary education as an instrumental variable. Participants who were <13 years old at the time of the policy change had 1.36 additional years of schooling compared to those who were ≥13 years old. Adjusting for linear age trends before and after the discontinuity, two-stage least squares estimates suggested no statistically significant causal effect of education on HIV stigma (P-values ranged from 0.21 to 0.69). Three of the four estimated regression coefficients were positive, and in all cases the lower confidence limits convincingly excluded the possibility of large negative effect sizes. These instrumental variables estimates have a causal interpretation and were not overturned by several robustness checks. We conclude that, for young adults in Uganda, additional years of education in the formal schooling system driven by a universal primary school intervention have not had a causal effect on reducing negative attitudes toward persons with HIV. Copyright © 2015 Elsevier Ltd. All rights reserved.
    No preview · Article · Aug 2015 · Social Science [?] Medicine
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