Disentangling HIV and AIDS Stigma in Ethiopia,Tanzania and Zambia

The International Center for Research on Women (ICRW), in partnership with organizations in Ethiopia, Tanzania, and Zambia, led a study of HIV and AIDS-related stigma and discrimination in these three countries. This project, conducted from April 2001 to September 2003, unraveled the complexities around stigma by investigating the causes, manifestations and consequences of HIV and AIDS-related stigma and discrimination in sub-Saharan Africa. It then uses this analysis to suggest program interventions. Structured text analysis of 730 qualitative transcripts (650 interviews and 80 focus group discussions) and quantitative analysis of 400 survey respondents from rural and urban areas in these countries revealed the following main insights about the causes, context, experience and consequences of stigma: The main causes of stigma relate to incomplete knowledge, fears of death and disease, sexual norms and a lack of recognition of stigma. Insufficient and inaccurate knowledge combines with fears of death and disease to perpetuate beliefs in casual transmission and, thereby, avoidance of those with HIV. The knowledge that HIV can be transmitted sexually combines with an association of HIV with socially “improper” sex, such that people with HIV are stigmatized for their perceived immoral behavior. Finally, people often do not recognize that their words or actions are stigmatizing. Socio-economic status, age and gender all influence the experience of stigma. The poor are blamed less for their infection than the rich, yet they face greater stigma because they have fewer resources to hide an HIV-positive status. Youth are blamed in all three countries for spreading HIV through what is perceived as their highly risky sexual behavior. While both men and women are stigmatized for breaking sexual norms, gender-based power results in women being blamed more easily. At the same time, the consequences of HIV infection, disclosure, stigma and the burden of care are higher for women than for men. People living with HIV and AIDS face physical and social isolation from family, friends, and community; gossip, name-calling and voyeurism; and a loss of rights, decision-making power and access to resources and livelihoods. People with HIV internalize these experiences and consequently feel guilty, ashamed and inferior. They may, as a result, isolate themselves and lose hope. Those associated with people with HIV and AIDS, especially family members, friends and caregivers, face many of these same experiences in the form of secondary stigma. People living with HIV and AIDS and their families develop various strategies to cope with stigma. Decisions around disclosure depend on whether or not disclosing would help to cope (through care) or make the situation worse (through added stigma). Some cope by participating in networks of people with HIV and actively working in the field of HIV or by confronting stigma in their communities. Others look for alternative explanations for HIV besides sexual transmission and seek comfort, often turning to religion to do so. Stigma impedes various programmatic efforts. Testing, disclosure, prevention and care and support for people with HIV are advocated, but are impeded by stigma. Testing and disclosure are recognized as difficult because of stigma, and prevention is hampered because preventive methods such as condom use or discussing safe sex are considered indications of HIV infection or immoral behaviors and are thus stigmatized. Available care and support are accompanied by judgmental attitudes and isolating behavior, which can result in people with HIV delaying care until absolutely necessary. There are also many positive aspects of the way people deal with HIV and stigma. People express good intentions to not stigmatize those with HIV. Many recognize that their limited knowledge has a role in perpetuating stigma and are keen to learn more. Families, religious organizations and communities provide care, empathy and support for people with HIV and AIDS. Finally, people with HIV themselves overcome the stigma they face to challenge stigmatizing social norms. Our study points to five critical elements that programs aiming to tackle stigma need to address: Create greater recognition of stigma and discrimination. Foster in-depth, applied knowledge about all aspects of HIV and AIDS through a participatory and interactive process. Provide safe spaces to discuss the values and beliefs about sex, morality and death that underlie stigma. Find common language to talk about stigma. Ensure a central, contextually-appropriate and ethically-responsible role for people with HIV and AIDS While all individuals and groups have a role in reducing stigma, policymakers and programmers can start with certain key groups that our study suggests are a priority: Families caring for people living with HIV and AIDS: programs can help families both to cope with the burden of care and also to recognize and modify their own stigmatizing behavior. NGOs and other community-based organizations: NGOs can train their own staff to recognize and deal with stigma, incorporate ways to reduce stigma in all activities, and critically examine their communication methods and materials. Religious and faith-based organizations: these can be supportive of people living with HIV and AIDS in their role as religious leaders and can incorporate ways to reduce stigma in their community service activitie

Women, communities, and the prevention of mother-to-child transmission of HIV: Issues and findings from community research in Botswana and Zambia

This paper discusses research in Botswana and Zambia that showed gaps in community knowledge about HIV transmission, particularly from mother to child, and yielded insights into community perspectives about the barriers to using voluntary counseling and testing services; the stigma and fear associated with HIV; traditional norms on breastfeeding; and the role of family and community members in women’s decisions to participate in programs to prevent mother-to-child transmission of HIV. A separate Population Council publication (“Community involvement in the prevention of mother-to-child transmission of HIV: Insights and recommendations”) offers recommendations for community involvement strategies that will encourage program planners to include community participation, education, and mobilization as critical program elements. An intervention that addresses mother-to-child transmission of HIV is complex, yet it is one of the few biomedical interventions currently available for reducing the transmission of HIV that is feasible and affordable in resource-constrained settings. Placed within the framework of community involvement, it offers an enormous opportunity to improve HIV prevention and care. Successful interventions can influence how AIDS is perceived by the community, reduce stigma, and have an effect beyond the immediate prevention of perinatal transmission

Community involvement in the prevention of mother-to-child transmission of HIV: Insights and recommendations

Mother-to-child transmission is the primary route of HIV infection in children under 15 years of age. Since the beginning of the HIV epidemic, an estimated 5.1 million children worldwide have been infected with HIV. Clinical trials in several countries have shown that mother-to-child transmission of HIV can be greatly reduced through administering antiretroviral therapy to pregnant women. These trials culminated in a recommendation by UNAIDS and its partners in the Interagency Task Team for the Prevention of Mother-to-Child Transmission that prevention of perinatal transmission should be a part of the standard package of care for HIV-positive women and their children. Moreover, prevention programs can enhance communities’ response to HIV. In 1999, the Population Council and the International Center for Research on Women initiated activities to identify mechanisms for enhancing community involvement in efforts to prevent mother-to-child transmission. The organizations reviewed the literature on community involvement in the introduction of technologies and assessed community views on preventing mother-to-child transmission in Botswana and Zambia. The literature review provided information about community involvement in earlier introductions of technologies. As noted in this report, that information can guide appropriate and effective community involvement

Building the evidence base for stigma and discrimination-reduction programming in Thailand: development of tools to measure healthcare stigma and discrimination

Abstract Background HIV-related stigma and discrimination (S&D) are recognized as key impediments to controlling the HIV epidemic. S&D are particularly detrimental within health care settings because people who are at risk of HIV and people living with HIV (PLHIV) must seek services from health care facilities. Standardized tools and monitoring systems are needed to inform S&D reduction efforts, measure progress, and monitor trends. This article describes the processes followed to adapt and refine a standardized global health facility staff S&D questionnaire for the context of Thailand and develop a similar questionnaire measuring health facility stigma experienced by PLHIV. Both questionnaires are currently being used for the routine monitoring of HIV-related S&D in the Thai healthcare system. Methods The questionnaires were adapted through a series of consultative meetings, pre-testing, and revision. The revised questionnaires then underwent field testing, and the data and field experiences were analyzed. Results Two brief questionnaires were finalized and are now being used by the Department of Disease Control to collect national routine data for monitoring health facility S&D: 1) a health facility staff questionnaire that collects data on key drivers of S&D in health facilities (i.e., fear of HIV infection, attitudes toward PLHIV and key populations, and health facility policy and environment) and observed enacted stigma and 2) a brief PLHIV questionnaire that captures data on experienced discriminatory practices at health care facilities. Conclusions This effort provides an example of how a country can adapt global S&D measurement tools to a local context for use in national routine monitoring. Such data helps to strengthen the national response to HIV through the provision of evidence to shape S&D-reduction programming

Can mother-to-child transmission of HIV be eliminated without addressing the issue of stigma? Modeling the case for a setting in South Africa.

BACKGROUND: Stigma and discrimination ontinue to undermine the effectiveness of the HIV response. Despite a growing body of evidence of the negative relationship between stigma and HIV outcomes, there is a paucity of data available on the prevalence of stigma and its impact. We present a probabilistic cascade model to estimate the magnitude of impact stigma has on mother-to-child-transmission (MTCT). METHODS: The model was parameterized using 2010 data from Johannesburg, South Africa, from which loss-to-care at each stage of the antenatal cascade were available. Three scenarios were compared to assess the individual contributions of stigma, non-stigma related barriers, and drug ineffectiveness on the overall number of infant infections. Uncertainty analysis was used to estimate plausible ranges. The model follows the guidelines in place in 2010 when the data were extracted (WHO Option A), and compares this with model results had Option B+ been implemented at the time. RESULTS: The model estimated under Option A, 35% of infant infections being attributed to stigma. This compares to 51% of total infections had Option B+ been implemented in 2010. Under Option B+, the model estimated fewer infections than Option A, due to the availability of more effective drugs. Only 8% (Option A) and 9% (Option B+) of infant infections were attributed to drug ineffectiveness, with the trade-off in the proportion of infections being between stigma and non-stigma-related barriers. CONCLUSIONS: The model demonstrates that while the effect of stigma on retention of women at any given stage along the cascade can be relatively small, the cumulative effect can be large. Reducing stigma may be critical in reaching MTCT elimination targets, because as countries improve supply-side factors, the relative impact of stigma becomes greater. The cumulative nature of the PMTCT cascade results in stigma having a large effect, this feature may be harnessed for efficiency in investment by prioritizing interventions that can affect multiple stages of the cascade simultaneously

Improving hospital-based quality of care in Vietnam by reducing HIV-related stigma and discrimination

To address HIV-related stigma and discrimination, and improve the quality of care in the healthcare setting in Vietnam, the Institute for Social and Development Studies, the International Center for Research on Women, and the Horizons Program conducted intervention research in four hospitals. The study team conceptualized two fundamental causes of HIV-related stigma: 1) fear of casual transmission; and 2) negative values/social judgments and associations between HIV and certain behaviors and groups, such as sex workers and injecting drug users. Both intervention strategies successfully reduced stigma and discrimination toward HIV-positive patients in these healthcare settings. The findings show that addressing stigma and discrimination in the healthcare setting can contribute to improving the quality of health care for HIV-positive patients. Further, effective approaches to reduce stigma and discrimination in healthcare settings need to address the hospital environment and reach all hospital workers

Combating HIV stigma in health care settings: what works?

The purpose of this review paper is to provide information and guidance to those in the health care setting about why it is important to combat HIV-related stigma and how to successfully address its causes and consequences within health facilities. Research shows that stigma and discrimination in the health care setting and elsewhere contributes to keeping people, including health workers, from accessing HIV prevention, care and treatment services and adopting key preventive behaviours

Moving forward: Tackling stigma in a Tanzanian community

The International Center for Research on Women, the Muhimbili University College of the Health Sciences, the Population Council, and Family Health International conducted an evaluation of a community-based effort to reduce stigma surrounding HIV infections in a peri-urban community in Tanzania. Results presented a mixed, but hopeful, picture for a way forward in tackling stigma at the community level. Tackling stigma requires that the individuals tasked with doing this undergo personal change. Programs can start by focusing stigma-reduction efforts on a smaller, more manageable geographical area and adding specific anti-stigma components to their portfolio of activities. Engaging community opinion leaders (e.g., political, religious, and youth leaders, and healthcare workers) is a promising way forward for scaling up stigma-reduction at the community level

The importance of the individual in PrEP uptake : multilevel correlates of PrEP uptake among adolescent girls and young women in Tshwane, South Africa

DATA AVAILABILITY : Data is available upon request from Dr. Wendee Wechsberg.Adolescent girls and young women (AGYW) account for 25% of new HIV infections in South Africa. Pre-exposure prophylaxis (PrEP) is approved by the South African Government, but the factors that promote PrEP uptake among AGYW are not well understood. This study examines multilevel factors associated with PrEP uptake among AGYW in six clinic catchment areas in Tshwane (Pretoria), South Africa. After consent/assent, PrEP-eligible AGYW (n = 448) completed a questionnaire assessing factors at the individual, network/interpersonal, and community levels and were prescribed PrEP in study clinics, if interested. A multivariable model, adjusting for clustering, assessed factors associated with PrEP uptake over a 9-month period. At the individual level, multiple partners in the past 3 months (OR = 0.47), perceived risk of HIV (OR = 0.71), and PrEP-related shame (OR = 0.63) were correlated with lower odds of PrEP uptake (ps ≤ 0.05). The findings highlight modifiable factors that should be addressed to support PrEP uptake efforts.The Eunice Kennedy Shriver National Institute of Child Health & Human Development of the National Institutes of Health.https://link.springer.com/journal/104612024-07-13hj2024Medical MicrobiologySDG-03:Good heatlh and well-bein

HIV Stigma Reduction for Health Facility Staff: Development of a Blended- Learning Intervention

Introduction: The effect of stigma on health and health inequity is increasingly recognized. While many medical conditions trigger stigmatization, the negative effects of HIV stigma are particularly well documented. HIV stigma undermines access, uptake, and adherence to both HIV prevention and treatment. People living with HIV face stigma in all aspects of their daily lives; however, stigma in the health system is particularly detrimental. A key component for health facility stigma-reduction interventions is participatory training of staff, often through several days of in-person training. Though this approach shows promise, it is time intensive and poses challenges for busy health facilities. In response, the DriSti study has developed a brief blended-learning approach to stigma reduction in Karnataka State, India. This paper describes the process and final content of the intervention development. The intervention is currently being tested. Final evaluation results will be published upon study completion.Methods: Grounded in behavior change strategies based on social cognitive theory principles that stress the importance of combining interpersonal interactions with specific strategies that promote behavior change, we used a three-phase approach to intervention development: (1) content planning—review of existing participatory stigma-reduction training activities; (2) story boarding—script development and tablet content production; and (3) pilot testing of tablet and in-person session materials.Results: The final intervention curriculum consists of three sessions. Two initial self-administered tablet sessions focus on stigma awareness, attitudes, fears of HIV transmission, and use of standard precautions. The third small group session covers the same material but includes skill building through role-play and testimony by a person living with HIV. A study team member administers the tablet sessions, explains the process, and is present throughout to answer questions.Conclusion: This paper describes the theoretical underpinning and process of developing the blended-learning curriculum content, and practical lessons learned.The approach covers three key drivers of HIV stigma—stigma awareness, fear of HIV transmission, and attitudes. Developing video content for the self-directed learning is complex, requires a diverse set of people and skills, and presents unexpected opportunities for stigma reduction. Co-facilitation of the in-person session by someone living with HIV is a critical component