Jennifer N. Sayles

Stigma in the HIV/AIDS epidemic: A review of the literature and recommendations for the way forward

Although stigma is considered a major barrier to effective responses to the HIV/AIDS epidemic, stigma reduction efforts are relegated to the bottom of AIDS programme priorities. The complexity of HIV/AIDS-related stigma is often cited as a primary reason for the limited response to this pervasive phenomenon. In this paper, we systematically review the scientific literature on HIV/AIDS-related stigma to document the current state of research, identify gaps in the available evidence and highlight promising strategies to address stigma. We focus on the following key challenges: defining, measuring and reducing HIV/AIDS-related stigma as well as assessing the impact of stigma on the effectiveness of HIV prevention and treatment programmes. Based on the literature, we conclude by offering a set of recommendations that may represent important next steps in a multifaceted response to stigma in the HIV/AIDS epidemic.

The Association of Stigma with Self-Reported Access to Medical Care and Antiretroviral Therapy Adherence in Persons Living with HIV/AIDS

BackgroundThe stigma of HIV-infection may profoundly affect the lives of persons living with HIV/AIDS (PLHA). However few studies have examined the association of HIV stigma with multiple components of HIV treatment and care.ObjectivesTo estimate the association between HIV stigma and: self-reported access to care, regular source of HIV care, and antiretroviral therapy adherence; and to test whether mental health mediates these associations. DesignCross-sectional study.Participants202 PLHA living in Los Angeles County in 2007.MeasurementsParticipants completed an anonymous survey, assessing internalized HIV stigma (28-items, alpha = 0.93), self-reported access to medical care (six items, alpha = 0.75), regular source of HIV care, and antiretroviral therapy (ART) adherence.ResultsOne-third of participants reported high levels of stigma; 77% reported poor access to care; 42.5% reported suboptimal ART adherence; and 10.5% reported no regular source of HIV care. In unadjusted analysis, those reporting a high level of stigma were more likely to report poor access to care (OR = 4.97, 95% CI 2.54–9.72), regular source of HIV care (OR = 2.48, 95% CI 1.00–6.19), and ART adherence (OR = 2.45, 95% CI 1.23–4.91). In adjusted analyses, stigma was significantly associated with poor access to care (OR = 4.42, 95% CI 1.88–10.37), but not regular source of HIV care or ART adherence. Mental health mediated the relationship between stigma and ART adherence, but not poor access to care or regular source of HIV care.ConclusionsThe association of stigma with self-reported access to care and adherence suggests that efforts to improve these components of HIV care will require a better understanding of the possible effects of stigma and it′s mediators.

Experiences of Social Stigma and Implications for Healthcare Among a Diverse Population of HIV Positive Adults

Stigma profoundly affects the lives of people with HIV/AIDS. Fear of being identified as having HIV or AIDS may discourage a person from getting tested, from accessing medical services and medications, and from disclosing their HIV status to family and friends. In the present study, we use focus groups to identify the most salient domains of stigma and the coping strategies that may be common to a group of diverse, low-income women and men living with HIV in Los Angeles, CA (n=48). We also explore the impact of stigma on health and healthcare among HIV positive persons in our sample. Results indicate that the most salient domains of stigma include: blame and stereotypes of HIV, fear of contagion, disclosure of a stigmatized role, and renegotiating social contracts. We use the analysis to develop a framework where stigma is viewed as a social process composed of the struggle for both internal change (self-acceptance) and reintegration into the community. We discuss implications of HIV-related stigma for the mental and physical health of HIV-positive women and men and suggestions for possible interventions to address stigma in the healthcare setting.

Development and Psychometric Assessment of a Multidimensional Measure of Internalized HIV Stigma in a Sample of HIV-positive Adults

There is a need for a psychometrically sound measure of the stigma experienced by diverse persons living with HIV/AIDS (PLHA). The goal of this study was to develop and evaluate a multidimentional measure of internalized HIV stigma that captures stigma related to treatment and other aspects of the disease among sociodemographically diverse PLHA. We developed a 28-item measure of internalized HIV stigma composed of four scales based on previous qualitative work. Internal consistency reliability estimates in a sample of 202 PLHA was 0.93 for the overall measure, and exceeded 0.85 for three of the four stigma scales. Items discriminated well across scales, and correlations of the scales with shame, social support, and mental health supported construct validity. This measure should prove useful to investigators examining in the role of stigma in HIV treatment and health outcomes, and evaluating interventions designed to mitigate the impacts of stigma on PLHA.

Factors associated with self-efficacy for condom use and sexual negotiation among South african youth.

Objectives:To use logistic regression modeling to identify factors associated with high self-efficacy for sexual negotiation and condom use in a sample of South African youth. Methods:The Reproductive Health and HIV Research Unit (RHRU) National Youth Survey examined a nationally representative sample of 7409 sexually active South African youth aged 15 to 24 years. We used logistic regression modeling in this sample to identify factors associated with the main outcome of high self-efficacy. Results:Among female respondents (n = 3890), factors associated with high self-efficacy in the adjusted model were knowing how to avoid HIV (odds ratio [OR] = 2.30, 95% confidence interval [CI]: 1.05 to 5.00), having spoken with someone other than a parent or guardian about HIV/AIDS (OR = 1.46, 95% CI: 1.01 to 2.10), and having life goals (OR = 1.28, 95% CI: 1.10 to 1.48). Not using condoms during their first sexual encounter (OR = 0.61, 95% CI: 0.50 to 0.76), a history of unwanted sex (OR = 0.66, 95% CI: 0.51 to 0.86), and believing that condom use implies distrust in ones partner (OR = 0.57, 95% CI: 0.51 to 0.86) were factors associated with low self-efficacy among female respondents. Male respondents (n = 3519) with high self-efficacy were more likely to take HIV seriously (OR = 4.03, 95% CI: 1.55 to 10.52), to believe they are not at risk for HIV (OR = 1.38, 95% CI: 1.12 to 1.70), to report that getting condoms is easy (OR = 1.85, 95% CI: 1.23 to 2.77), and to have life goals (OR = 1.30, 95% CI: 1.10 to 1.54). Not using condoms during their first sexual experience (OR = 0.51, 95% CI: 0.39 to 0.67), a history of having unwanted sex (OR = 0.47, 95% CI: 0.34 to 0.64), believing condom use is a sign of not trusting ones partner (OR = 0.63, 95% CI: 0.46 to 0.87), and refusing to be friends with HIV-infected persons (OR = 0.52, 95% CI: 0.32 to 0.85) were factors associated with low self-efficacy among male respondents in the fully adjusted model. Conclusions:We used the social cognitive model (SCM) to identify factors associated with self-efficacy for condom use and sexual negotiation. Many of these factors are modifiable and suggest potential ways to improve self-efficacy and reduce HIV sexual risk behavior in South African youth.

Acceptability of pre-exposure prophylaxis as an HIV prevention strategy: barriers and facilitators to pre-exposure prophylaxis uptake among at-risk Peruvian populations

This study examined pre-exposure prophylaxis (PrEP) acceptability among female sex workers, male-to-female transgendered persons and men who have sex with men in Lima, Peru. Focus groups explored social issues associated with PrEP acceptability and conjoint analysis assessed preferences among eight hypothetical PrEP scenarios with varying attribute profiles and their relative impact on acceptability. Conjoint analysis revealed that PrEP acceptability ranged from 19.8 to 82.5 out of a possible score of 100 across the eight hypothetical PrEP scenarios. Out-of-pocket cost had the greatest impact on PrEP acceptability (25.2, P < 0.001), followed by efficacy (21.4, P < 0.001) and potential side-effects (14.7, P < 0.001). Focus group data supported these findings, and also revealed that potential sexual risk disinhibition, stigma and discrimination associated with PrEP use, and mistrust of healthcare professionals were also concerns. These issues will require careful attention when planning for PrEP roll-out.

The Impact of Acculturation on Utilization of HIV Prevention Services and Access to Care Among an At-Risk Hispanic Population

Introduction. HIV/AIDS disproportionately affects Hispanics in the United States, a diverse and heterogeneous population. The purpose of this study was to evaluate the relationship of acculturation with HIV and hepatitis C testing, and access to care among Hispanics at risk for HIV. Methods. We recruited 600 Hispanics from STD clinics, community-based organizations, and needle exchange programs in Los Angeles County. Results. Low levels of acculturation were significantly associated with having fewer HIV tests (OR 1.98, 95% CI 1.24, 3.15), no hepatitis C tests (OR 2.61, 95% CI 1.77, 3.84), testing positive for HIV (OR 2.67, 95% CI 1.04, 6.83), and low levels of access to care (β=0.06; p<.05). Conclusions. Low levels of acculturation are an important barrier to the use of HIV-related health care services. Our findings may inform the development of effective interventions that address the cultural and behavioral differences among Hispanic subgroups.

Future HIV Vaccine Acceptability Among Young Adults in South Africa

Developing and disseminating a preventive HIV vaccine is a primary scientific and public health objective. However, little is known about HIV vaccine acceptability in the high-prevalence setting of South Africa— where young adults are likely to be targeted in early dissemination efforts. This study reports on six focus groups ( n = 42) conducted in 2007 with South Africans aged 18 to 24 years. A deductive framework approach is used to identify key motivators and barriers to future HIV vaccine uptake. Participants identify HIV testing, HIV stigma, mistrust of the health care system, and concerns about sexual disinhibition as barriers to vaccine uptake. For women, family members and friends are strong motivators for vaccine uptake, whereas men are more likely to see vaccines as an opportunity to stop using HIV prevention strategies such as condoms and partner reduction. Implications of these findings for developing HIV vaccine dissemination strategies and policy in South Africa are discussed.

The role of mental health in mediating the relationship between social support and optimal ART adherence

Optimal adherence to antiretroviral therapy (ART) is essential for reducing mortality and morbidity in persons living with HIV/AIDS (PLWHA), as well as for reducing the risk of further HIV transmission. While studies have identified psychosocial factors such as lack of social support and poor mental health status as important barriers to optimal ART adherence, few studies have explored the potential of a mediation effect of psychosocial factors on the relationship between social support and optimal ART adherence. This paper assessed whether mental health status mediated the relationship between social support and optimal ART adherence among a cross-sectional sample of 202 persons living with HIV who were recruited from HIV clinical care sites and community-based organizations in Los Angeles County (LAC). Participants completed a survey that included social support items from the Medical Outcome Study: Social Support Survey (MOS-SSS) Instrument, mental health measures from the Medical Outcomes Study Short Form (SF-12), and ART adherence based on self-report. Among those currently taking ART, 61.7% reported having optimal adherence. Social support was significantly associated with a high score on the mental health status scale (AOR =2.90; 95% CI=1.14–5.78) and optimal ART adherence (AOR=1.81; 95% CI=1.81; 95% CI=1.18–2.79). When mental health status was introduced into the model, the association between social support and optimal ART adherence was no longer significant. Our findings suggest the HIV interventions targeting social support to improve ART adherence will likely be most successful if the support bolsters the mental health of the participants. Clearly, better understanding the relationships among social support, mental health, and ART adherence will be critical for development and implementation of future ART adherence interventions.

Perceptions of Sexual Risk Compensation Following Posttrial HIV Vaccine Uptake Among Young South Africans

Concerns about the impact of risk compensation on advances in biomedical human immunodeficiency virus (HIV) prevention technologies have been documented. We conducted an exploratory qualitative study using focus group discussions with young South African men and women (aged 18 to 24 years) to explore perceptions of risk compensation with regard to a hypothetical posttrial HIV vaccine. During the discussions, participants expressed their disquiet about the potential for risk compensation and the manner in which this might manifest among young people. Discussions specifically focused on reductions in condom use, an increase in multiple partners, and increased frequency of sex. The discussions also revealed contradictory feelings about HIV vaccines: appreciation for their development tempered by concerns about loss of control and undermining morality. Women were particularly concerned with the possibility of increased partner concurrency and infidelity. We suggest that concerns in HIV vaccine target populations about the impact of possible risk compensation be incorporated into strategies for vaccine introduction once vaccines move from the hypothetical to reality.