Elsa Heylen

Depression is not an Inevitable Outcome of Disclosure Avoidance: HIV Stigma and Mental Health in a Cohort of HIV Infected Individuals from Southern India

Previous research has shown that HIV stigma in India can be characterized by a framework dividing manifestations into enacted (discrimination), vicarious (hearing stories of discrimination), felt normative (perceptions of stigmas prevalence), and internalized stigma (personal endorsement of stigma beliefs). We examined whether this framework could explain associations among stigma, efforts to avoid HIV serostatus disclosure, and depression symptoms in a cohort of 198 HIV-infected individuals from Southern India who were followed up for one year as part of a study of antiretroviral adherence. Prior studies had suggested that disclosure avoidance was a primary outcome of stigma and that impaired well-being was a primary outcome of disclosure avoidance. Analyses from our longitudinal research revealed that the pattern of associations among stigma, disclosure avoidance, and depression symptoms remained consistent over time. Enacted and vicarious stigmas were correlated with felt normative stigma beliefs. In turn, felt normative stigma was correlated with disclosure avoidance. And, enacted stigma, internalized stigma, and disclosure avoidance were all associated with depression symptoms. However, even though the overall framework held together, internalized stigma and depression symptoms dropped significantly over time while other components remained unchanged. These findings suggest that, although HIV stigma may limit disclosure, it does not invariably lead to psychological maladjustment. Amidst ongoing perceptions and experiences of stigma, HIV-positive individuals can achieve significant improvements in their acceptance of the disease and in mental well-being.

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.

Developing useful highly active antiretroviral therapy adherence measures for India: the Prerana study.

This letter to the editor focuses on a study that was designed to address the impact of adherence on viral load the predictive validity of combined measures and the relationship between multiple adherence measures. The study addresses this gap by assessing the relationship between multiple self-reported adherence measures and HIV viral suppression in a longitudinal cohort of HIV-infected patients in Bangalore India.

High rates of adherence and treatment success in a public and public-private HIV clinic in India: potential benefits of standardized national care delivery systems

BackgroundThe massive scale-up of antiretroviral treatment (ART) access worldwide has brought tremendous benefit to populations affected by HIV/AIDS. Optimising HIV care in countries with diverse medical systems is critical; however data on best practices for HIV healthcare delivery in resource-constrained settings are limited. This study aimed to understand patient characteristics and treatment outcomes from different HIV healthcare settings in Bangalore, India.MethodsParticipants from public, private and public-private HIV healthcare settings were recruited between 2007 and 2009 and were administered structured interviews by trained staff. Self-reported adherence was measured using the visual analogue scale to capture adherence over the past month, and a history of treatment interruptions (defined as having missed medications for more than 48 hours in the past three months). In addition, CD4 count and viral load (VL) were measured; genotyping for drug resistance-associated mutations was performed on those who were in virological failure (VL > 1000 copies/ml).ResultsA total of 471 individuals were included in the analysis (263 from the public facility, 149 from the public-private facility and 59 from the private center). Private facility patients were more likely to be male, with higher education levels and incomes. More participants reported ≥ 95% adherence among public and public-private groups compared to private participants (public 97%; private 88%; public-private 93%, p < 0.05). Treatment interruptions were lowest among public participants (1%, 10%, 5% respectively, p < 0.001). Although longer clinic waiting times were experienced by more public participants (48%, compared to private 27%, public-private 19%, p < 0.001), adherence barriers were highest among private (31%) compared with public (10%) and public-private (17%, p < 0.001) participants. Viral load was detectable in 13% public, 22% private and 9% public-private participants (p < 0.05) suggesting fewer treatment failures among public and public-private settings. Drug resistance mutations were found more frequently among private facility patients (20%) compared to those from the public (9%) or public-private facility (8%, p < 0.05).ConclusionsAdherence and treatment success was significantly higher among patients from public and public-private settings compared with patients from private facilities. These results suggest a possible benefit of the standardized care delivery system established in public and public-private health facilities where counselling by a multi-disciplinary team of workers is integral to provision of ART. Strengthening and increasing public-private partnerships can enhance the success of national ART programs.

Reducing HIV stigma among nursing students: a brief intervention.

HIV stigma can be devastating and is common among health care providers, particularly nurses. The objectives of this study were to (a) assess the acceptability and feasibility of a brief stigma-reduction curriculum among a convenience sample of Indian nursing students and (b) examine the preliminary effect of this curriculum on their knowledge, attitudes, and intent to discriminate. At baseline, 57% of students had at least one misconception about HIV transmission, 38% blamed people living with HIV for their infection, and 87% and 95% demonstrated intent to discriminate while dispensing medications and drawing blood, respectively. Following the curriculum, HIV-related knowledge increased while blame, endorsement of coercive policies, and intent to discriminate decreased significantly. In addition, more than 95% of participants described the curriculum as practice changing. This brief intervention resulted in decreased stigma levels and was also highly acceptable to the nursing students. Next steps include rigorous evaluation in a randomized controlled trial.

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.

Long-Term Efficacy of First Line Antiretroviral Therapy in Indian HIV-1 Infected Patients: A Longitudinal Cohort Study

Background Short term efficacy of combination antiretroviral therapy (cART) in resource-constrained settings is comparable to that found in western studies. However, long term data are limited. India has the third largest HIV infected population in the world but the long-term outcome of first line therapy according to the national guidelines has not been evaluated yet. Therefore, we conducted a long-term longitudinal analysis of the efficacy of the national first-line therapy in India from an observational cohort of Indian patients in two different clinical settings. Methodology/Principal Findings A total 323 patients who had been on ART for a median of 23 months and achieved virological suppression <100 copies/ml by their study baseline visit, were included and followed for two years. Blood samples were collected every six months for viral load and CD4 count. Drug resistance genotyping was performed when the viral load was >2000 copies/mL. Adherence and treatment interruptions (>48 h) were assessed via self-report. In the studied patients, the median duration of viral suppression was 44 months; 15.8% of patients showed viral rebound, and 2.8% viral failure. Viral rebound or failure was significantly negatively related to perfect adherence (100% adherence and no treatment interruption >48 hrs). Virological re-suppression in the subsequent visit was observed in three patients without any change in therapy despite the presence of key mutations. Conclusion/Significance Our study reports for the first time, a good long-term response to the first line therapy for a median of nearly four years although a less than perfect adherence increases the risk for treatment failure and subsequent drug resistance development. The empirical findings in this study also indicate the overall success of the Indian ART program in two different settings which likely are representative of other clinics that operate under the national guidelines.

Evaluation of WHO immunologic criteria for treatment failure: implications for detection of virologic failure, evolution of drug resistance and choice of second-line therapy in India

Routine HIV viral load (VL) testing is not available in India. We compared test performance characteristics of immunologic failure (IF) against the gold standard of virologic failure (VF), examined evolution of drug resistance among those who stayed on a failing regimen because they did not meet criteria for IF and assessed implications for second‐line therapy.