Shalini Bharat

HIV-related stigma: Adapting a theoretical framework for use in India

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 ones HIV serostatus.

Understanding and measuring AIDS-related stigma in health care settings: A developing country perspective

AIDS-related stigma and discrimination remain pervasive problems in health care institutions worldwide. This paper reports on stigma-related baseline findings from a study in New Delhi, India to evaluate the impact of a stigma-reduction intervention in three large hospitals. Data were collected via in-depth interviews with hospital staff and HIV-infected patients, surveys with hospital workers (884 doctors, nurses and ward staff) and observations of hospital practices. Interview findings highlighted drivers and manifestations of stigma that are important to address, and that are likely to have wider relevance for other developing country health care settings. These clustered around attitudes towards hospital practices, such as informing family members of a patients HIV status without his/her consent, burning the linen of HIV-infected patients, charging HIV-infected patients for the cost of infection control supplies, and the use of gloves only with HIV-infected patients. These findings informed the development and evaluation of a culturally appropriate index to measure stigma in this setting. Baseline findings indicate that the stigma index is sufficiently reliable (alpha = 0.74). Higher scores on the stigma index – which focuses on attitudes towards HIV-infected persons – were associated with incorrect knowledge about HIV transmission and discriminatory practices. Stigma scores also varied by type of health care providers – physicians reported the least stigmatising attitudes as compared to nursing and ward staff in the hospitals. The study findings highlight issues particular to the health care sector in limited-resource settings.To be successful, stigma-reduction interventions, and the measures used to assess changes, need to take into account the sociocultural and economic context within which stigma occurs.

Stigma Is Associated with Delays in Seeking Care among HIV-Infected People in India

Background: Stigma shapes the lives of people living with HIV and may affect their willingness to seek medical care. But treatment delays can compromise health and increase the risk of transmission to others. Purpose: To examine whether the 4 stigma manifestations—enacted (discrimination), vicarious (hearing stories of discrimination), felt normative (perceptions of stigma’s prevalence), and internalized (personal endorsement of stigma beliefs)—were linked with delays in seeking care among HIV-infected people in India. Methods: A cross-sectional survey was conducted with 961 HIV-positive men and women in Mumbai and Bengaluru. Results: Enacted and internalized stigmas were correlated with delays in seeking care after testing HIV positive. Depression symptoms mediated the associations of enacted and internalized stigmas with care-seeking delays, whereas efforts to avoiding disclosing HIV status mediated only the association between internalized stigma and care-seeking delays. Conclusion: It is vital to develop stigma reduction interventions to ensure timely receipt of care.

Prevalence and drivers of HIV stigma among health providers in urban India: implications for interventions

HIV stigma inflicts hardship and suffering on people living with HIV (PLHIV) and interferes with both prevention and treatment efforts. Health professionals are often named by PLHIV as an important source of stigma. This study was designed to examine rates and drivers of stigma and discrimination among doctors, nurses and ward staff in different urban healthcare settings in high HIV prevalence states in India.

Blame, Symbolic Stigma and HIV Misconceptions are Associated with Support for Coercive Measures in Urban India

This study was designed to examine the prevalence of stigma and its underlying factors in two large Indian cities. Cross-sectional interview data were collected from 1,076 non-HIV patients in multiple healthcare settings in Mumbai and Bengaluru, India. The vast majority of participants supported mandatory testing for marginalized groups and coercive family policies for PLHA, stating that they “deserved” their infections and “didn’t care” about infecting others. Most participants did not want to be treated at the same clinic or use the same utensils as PLHA and transmission misconceptions were common. Multiple linear regression showed that blame, transmission misconceptions, symbolic stigma and negative feelings toward PLHA were significantly associated with both stigma and discrimination. The results indicate an urgent need for continued stigma reduction efforts to reduce the suffering of PLHA and barriers to prevention and treatment. Given the high levels of blame and endorsement of coercive policies, it is crucial that such programs are shaped within a human rights framework.

A systematic review of HIV/AIDS-related stigma and discrimination in India: current understanding and future needs.

HIV/AIDS-related stigma is recognised as a major barrier to HIV prevention efforts and an impediment to mitigating its impact on individuals and communities. This paper reviews the existing research literature on AIDS stigma in India with the objective of documenting the current status of research, highlighting major findings and identifying key gaps remaining. Thirty publications were identified through a careful search of which a majority focused on stigma assessment and very few on stigma measurement, conceptual aspects of stigma or stigma reduction interventions. A few standardised stigma measures are available but more are required to assess causes of stigma among general population and compounded and internalised stigma among positive people. Research exploring linkages between stigma and HIV services uptake or the effect of HIV care and treatment programs on stigma levels are largely missing and need to be prioritised. In addition, more research is needed to advance conceptual understanding of stigma within the cultural context of the country including research on the neglected groups such as, transgender people. Context-specific (health care, community) interventions are needed to address various forms of stigma – enacted, perceived, internalised and layered – including structural approaches besides inter-personal and information-based approaches. A major gap relates to meager research on developing and evaluating stigma reduction interventions and needs priority focus. Overall, the review recommends developing a national agenda on AIDS stigma research and interventions to help realise the governments goal of stigma reduction.

Household and community responses to HIV and AIDS in developing countries

Abstract Household and community responses to HIV and AIDS are shaped by the contexts in which women, men and children live and socialize. In this study carried out in the Dominican Republic, Mexico, India, Tanzania and Thailand, factors relating to economic resources and gender influenced the forms of care and support made available to people living with HIV and AIDS. Adults and children in poorer households and communities suffered most. Beliefs about sexual transmission were influenced by what was, and was not, thought to be appropriate conduct for men and women. Prevailing gender relations affected what care was provided, by whom, to people living with HIV and AIDS. Future programmes of HIV-related prevention and care should place more stress on the vulnerability of poorer households and women. More attention needs to be paid to investing in, and supporting, those in the informal sector (mostly women) who provide care. Furthermore, the responsibilities of men to appraise their own HIV-related risk and...

Are Female Sex Workers Able to Negotiate Condom Use with Male Clients? The Case of Mobile FSWs in Four High HIV Prevalence States of India

Introduction Condom promotion among female sex workers (FSWs) is a key intervention in India’s National AIDS Control Program. However, there is limited understanding of how FSWs negotiate condom use with male clients, particularly in the context of their mobility for sex work. The objective of this study is to examine the factors associated with the mobile FSWs’ ability to refuse unsafe sex and successfully negotiate condom use with unwilling male clients. Methods Data for 5498 mobile FSWs from a cross-sectional survey conducted in 22 districts of four states in southern India were analyzed. Questions assessed FSWs’ ability to refuse clients unprotected sex, convince unwilling clients for condom use and negotiate condom use in a new location. Logistic regression models were constructed to examine the association between socio-demographics, economic vulnerability, sex work practice, and program exposure and condom negotiation ability. Results A majority of FSWs (60%) reported the ability to refuse clients for unprotected sex, but less than one-fifth reported the ability to successfully convince an unwilling client to use a condom or to negotiate condom use in a new site. Younger and older mobile FSWs compared to those who were in the middle age group, those with longer sex work experience, with an income source other than sex work, with program exposure and who purchased condoms for use, reported the ability to refuse unprotected sex, to successfully negotiate condom use with unwilling clients and to do so at new sites. Conclusion FSWs need to be empowered to not only refuse unprotected sex but also to be able to motivate and convince unwilling clients for condom use, including those in new locations. In addition to focusing on condom promotion, interventions must address the factors that impact FSWs’ ability to negotiate condom use.

Risk reduction and perceived collective efficacy and community support among female sex workers in Tamil Nadu and Maharashtra, India: the importance of context

Background Empowering sex workers to mobilise and influence the structural context that obstructs risk reduction efforts is now seen an essential component of successful HIV prevention programmes. However, success depends on local programme environments and history. Methods The authors analysed data from the Integrated Behavioural and Biological Assessment Round I cross-sectional survey among female sex workers in Tamil Nadu and Maharashtra. The authors used propensity score matching to estimate the impact of participation in intervention activities on reduction of risk (consistent condom use) and vulnerability (perceived collective efficacy and community support). Results Background levels of risk and vulnerability as well as intervention impact varied widely across the different settings. The effect size ATT of attending meetings/trainings on consistent condom use was as high as 21% in Tamil Nadu (outside of Chennai) where overall use was lowest at 51%. Overall, levels of perceived collective efficacy were low at the time of the survey; perceived community support was high in Tamil Nadu and especially in Chennai (93%) contrasting with 33% in Mumbai. Consistent with previous research, the context of Mumbai seems least conducive to vulnerability reduction, yet self-help groups had a significant impact on consistent condom use (ATT=10%) and were significantly associated with higher collective efficacy (ATT=31%). Conclusions Significant risk reduction can be achieved by large-scale female sex worker interventions, but the impact depends on the history of programming, the complexity of the context in which sex work happens and pre-existing levels of support sex workers perceive from their peers.

Differences in testing, stigma, and perceived consequences of stigmatization among heterosexual men and women living with HIV in Bengaluru, India.

Approximately 2.4 million people in India are living with HIV. Gender inequality affects HIV prevention, detection, and management. The purpose of this paper was to describe gender differences in the experience of living with HIV in Bengaluru, India. A subsample of n = 313 (159 men and 154 women) from a larger cohort was used for these analyses. Participants were recruited through AIDS service organizations. They completed an interviewer-administered survey assessing HIV testing experience, types of stigma, and perceived consequences of stigmatization. The majority of men (67%) reported getting HIV tested because of illness, while women were more likely to be tested after learning their spouses HIV-positive status (42%). More men (59%) than women (45%, p<0.05) were tested in private care settings. Men reported significantly higher mean levels of internalized stigma (men: M=0.71, SD = 0.63; women: M=0.46, SD = 0.55; p<0.001), whereas the women reported significantly higher scores for enacted stigma (men: M=1.30, SD = 1.69; women: M=2.10, SD = 2.17; p<0.001). These differences remained significant after controlling for potential socio-demographic covariates. Following their diagnosis, more women reported moving out of their homes (men: 16%; women: 26%; p<0.05). More men (89%) than women (66%; p<0.001) reported to have modified their sexual behavior after being diagnosed. These findings suggest that the experience of living with HIV and HIV stigma varies by gender in this population. Suggestions for a gender-based approach to HIV prevention and stigma reduction are provided.