Laura Nyblade

HIV-related Stigma as a Barrier to Achievement of Global PMTCT and Maternal Health Goals: A Review of the Evidence

The global community has set goals of virtual elimination of new child HIV infections and 50 percent reduction in HIV-related maternal mortality by the year 2015. Although much progress has been made in expanding prevention of mother-to-child transmission (PMTCT) services, there are serious challenges to these global goals, given low rates of utilization of PMTCT services in many settings. We reviewed the literature from low-income settings to examine how HIV-related stigma affects utilization of the series of steps that women must complete for successful PMTCT. We found that stigma negatively impacts service uptake and adherence at each step of this “PMTCT cascade”. Modeling exercises indicate that these effects are cumulative and therefore significantly affect rates of infant HIV infection. Alongside making clinical services more available, effective, and accessible for pregnant women, there is also a need to integrate stigma-reduction components into PMTCT, maternal, neonatal, and child health services.ResumenLa comunidad internacional se ha fijado metas de eliminación virtual de las nuevas infecciones por el VIH infantil y una reducción de 50 por ciento en la mortalidad maternal relacionada con el VIH para el año 2015. Aunque se ha avanzado mucho en la expansión de la prevención de la transmisión materno-infantil (PTMI), existen serios desafíos para estos objetivos globales, dada las bajas tasas de utilización de los servicios de prevención en muchos lugares. Revisamos la literatura sobre estes temas en paises de bajos recursos para examinar cómo el estigma afecta a la utilización de una serie de pasos que las mujeres deben completar para una PTMI exitosa. Se encontró que el estigma afecta negativamente la aceptación del servicio y la adherencia en cada paso de la cascada de los servicios de PTMI. Los ejercicios de simulación indican que estos efectos sean acumulativos, y afectan significativamente las tasas de infección por VIH en infantes. Además de hacer que los servicios clínicos son más disponibles, efectivos y accesibles para las mujeres embarazadas, también se necesita integrar componentes de la reducción del estigma en los servicios de la salud maternal, neonatal, infantil, y de PTMI.

A brief, standardized tool for measuring HIV-related stigma among health facility staff: results of field testing in China, Dominica, Egypt, Kenya, Puerto Rico and St. Christopher & Nevis

Within healthcare settings, HIV‐related stigma is a recognized barrier to access of HIV prevention and treatment services and yet, few efforts have been made to scale‐up stigma reduction programs in service delivery. This is in part due to the lack of a brief, simple, standardized tool for measuring stigma among all levels of health facility staff that works across diverse HIV prevalence, language and healthcare settings. In response, an international consortium led by the Health Policy Project, has developed and field tested a stigma measurement tool for use with health facility staff.

HIV-Related Stigma Among Healthcare Providers in the Deep South

Stigma towards people living with HIV (PLWH) in healthcare settings is a barrier to optimal treatment. However, our understanding of attitudes towards PLWH from healthcare providers’ perspective in the United States is limited and out-of-date. We assessed HIV-related stigma among healthcare staff in Alabama and Mississippi, using online questionnaires. Participants included 651 health workers (60xa0% White race; 83xa0% female). Multivariate regression suggests that several factors independently predict stigmatizing attitudes: Protestant compared to other religions (βxa0=xa00.129, pxa0≤xa00.05), White race compared to other races (βxa0=xa00.162, pxa0≤xa00.001), type of clinic (HIV/STI clinic: βxa0=xa00.112, pxa0≤xa00.01), availability of post-exposure prophylaxis (yes: βxa0=xa0−0.107, pxa0≤xa00.05), and perceptions of policy enforcement (policies not enforced: βxa0=xa00.058, pxa0=xa0pxa0≤xa00.05). These findings may assist providers wishing to improve the quality care for PLWH. Enforcement of policies prohibiting discrimination may be a useful strategy for reducing HIV-related stigma among healthcare workers.

“Once I begin to participate, people will run away from me”: Understanding stigma as a barrier to HIV vaccine research participation in Kenya

PURPOSEnParticipation of volunteers in clinical research is essential to the development of effective HIV prevention methods, including an HIV vaccine. This study expands current knowledge of stigma and discrimination related to participation in HIV vaccine research in sub-Saharan Africa by exploring the perception of stigma and discrimination as a barrier to participation in HIV vaccine research in Kenya.nnnMETHODSnEighteen focus groups with a total of 133 participants and 82 individual interviews were conducted with a range of respondents at two centers in Nairobi, Kenya: a preventive AIDS vaccine trial center; and a preparatory clinical and epidemiological study center. Respondents included peer leaders, community advisory board members, former and current volunteers in clinical research, study staff, community leaders and community members. Data were analyzed using an iterative coding process.nnnRESULTSnFour prominent stigma-related barriers to participation emerged among all respondent groups, across both centers: (1) volunteers are often assumed by family and community members to be HIV positive because of their participation in vaccine research; (2) HIV-related stigma is perceived as pervasive and damaging in the communities where volunteers live, thus they fear consequent stigma if people believe them to be HIV positive; (3) potential volunteers fear being tested for HIV, a prerequisite for participation, because of possible disclosure of HIV status in communities with high perceived HIV-related stigma; and (4) volunteers must carefully manage information about their participation because of misperceptions and assumptions about vaccine research volunteers.nnnCONCLUSIONSnHIV-related stigma and discrimination influence peoples decisions to join HIV-vaccine related research. Findings underscore a need for integration of stigma-reduction programming into education and outreach activities for volunteers, and the communities in which they live. This is particularly critical for trials recruiting individuals with higher HIV risk, who are often already highly stigmatized.

Different dimensions of HIV-related stigma may have opposite effects on hiv testing: evidence among young men and women in South Africa.

Although HIV-related stigma in general is known to deter HIV-testing, the extent to which different dimensions of stigma independently influence testing behaviour is poorly understood. We used data on young black men (nxa0=xa0553) and women (nxa0=xa0674) from the 2009 Cape Area Panel Study to examine the independent effects of stigmatising attitudes, perceived stigma and observedxa0enacted stigma on HIV-testing. Multivariate logistic regression models showed that stigma had a strong relationship with HIV-testing among women, but not men. Women who held stigmatising attitudes were more likely to have been tested (OR 3, pxa0<xa00.01), while perceived stigma (OR 0.61, pxa0<xa00.1) and observedxa0enacted stigma (OR 0.42, pxa0<xa00.01) reduced the odds significantly of women having had an HIV test. Our findings highlight that different dimensions of stigma may have opposite effects on HIV testing, and point towards the need for interventions that limit the impact of enacted and perceived stigma on HIV-testing among women.

Report from a symposium on catalyzing primary and secondary prevention of cancer in India.

AbstractPurposeOral, breast, and cervical cancers are amenable to early detection and account for a third of India’s cancer burden. We convened a symposium of diverse stakeholders to identify gaps in evidence, policy, and advocacy for the primary and secondary prevention of these cancers and recommendations to accelerate these efforts.nMethodsIndian and global experts from government, academia, private sector (health care, media), donor organizations, and civil society (including cancer survivors and patient advocates) presented and discussed challenges and solutions related to strategic communication and implementation of prevention, early detection, and treatment linkages.ResultsInnovative approaches to implementing and scaling up primary and secondary prevention were discussed using examples from India and elsewhere in the world. Participants also reflected on existing global guidelines and national cancer prevention policies and experiences.ConclusionsSymposium participants proposed implementation-focused research, advocacy, and policy/program priorities to strengthen primary and secondary prevention efforts in India to address the burden of oral, breast, and cervical cancers and improve survival.

Perceived, anticipated and experienced stigma: exploring manifestations and implications for young people’s sexual and reproductive health and access to care in North-Western Tanzania

Abstract Young people – particularly girls and young women in sub-Saharan Africa – face significant challenges accessing sexual and reproductive health information and services. These challenges are shaped in part by sociocultural factors, including stigma. This paper presents findings from a qualitative study that explored the micro-level social process of stigma surrounding young people’s sexual and reproductive health in two communities in Tanzania. Respondents described an environment of pervasive stigma surrounding the sexual and reproductive health of unmarried young people. Stigma manifested itself in multiple forms, ranging from verbal harassment and social isolation to physical punishment by families, community members, peers and healthcare providers. Respondents perceived that stigma was a barrier to young people accessing sexual and reproductive health services and identified excessive questioning, scolding and requirements to bring sexual partners or parents to receive services at health facilities as obstacles to accessing care. The pervasiveness and complexities of stigma surrounding young people’s sexual and reproductive health in the two study communities and its potential consequences for health suggest both a need for care in using the term stigma as well as further studies on the feasibility of incorporating stigma-reduction strategies into young people’s sexual and reproductive health programmes.

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

BackgroundHIV-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.MethodsThe 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.ResultsTwo 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.ConclusionsThis 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.

A qualitative exploration of cervical and breast cancer stigma in Karnataka, India

BackgroundBreast and cervical cancer are two of the most common cancers among women worldwide and were the two leading causes of cancer related death for women in India in 2013. While it is recognized that psychosocial and cultural factors influence access to education, prevention, screening and treatment, the role of stigma related to these two cancers has received limited attention.MethodsTwo qualitative exploratory studies. One focusing on cervical cancer, the other on breast cancer, were conducted in Karnataka, India using in-depth interviews and focus group discussions. In the breast cancer study, 59 in-depth interviews were conducted with patients, primary caregivers and healthcare providers. In the cervical cancer study, 147 respondents were interviewed including older and younger women, husbands, healthcare providers and community leaders. While stigma was not the focus of either study, themes relating to stigma emerged and are the focus of this analysis.ResultsCancer stigma emerged as a general theme across both data sets. It appeared throughout the transcripts as descriptions of how women with breast or cervical cancer would be treated and talked about by husbands, family and the community (manifestations of stigma) and the reasons for this behavior. Stigma as a theme also arose through discussions around managing disclosure of a cancer diagnosis. Stigma was juxtaposed with a narrative of support for women with cancer. Three major themes emerged as driving the manifestations of cancer stigma: fear of casual transmission of cancer; personal responsibility for having caused cancer, and; belief in and fear of the inevitability of disability and death with a cancer diagnosis. Manifestations of cancer stigma were described in terms of experienced (enacted) stigma, including isolation or verbal stigma, and anticipated (fear of) stigma, should a cancer diagnosis be disclosed.ConclusionsThe presence in these communities of cancer stigma and its many forms emerged across both the cervical and breast cancer data sets. Stigma was a feared outcome of a cancer diagnosis and described as a barrier to screening, early diagnosis and treatment seeking for women with symptoms. While further research on cancer stigma is needed, this exploration of some of the driving factors provides insight for future programmatic efforts to reduce cancer stigma and improve access to information, screening and treatment.

The relationship between health worker stigma and uptake of HIV counseling and testing and utilization of non-HIV health services: the experience of male and female sex workers in Kenya

ABSTRACT The barrier HIV-stigma presents to the HIV treatment cascade is increasingly documented; however less is known about female and male sex worker engagement in and the influence of sex-work stigma on the HIV care continuum. While stigma occurs in all spheres of life, stigma within health services may be particularly detrimental to health seeking behaviors. Therefore, we present levels of sex-work stigma from healthcare workers (HCW) among male and female sex workers in Kenya, and explore the relationship between sex-work stigma and HIV counseling and testing. We also examine the relationship between sex-work stigma and utilization of non-HIV health services. A snowball sample of 497 female sex workers (FSW) and 232 male sex workers (MSW) across four sites was recruited through a modified respondent-driven sampling process. About 50% of both male and female sex workers reported anticipating verbal stigma from HCW while 72% of FSW and 54% of MSW reported experiencing at least one of seven measured forms of stigma from HCW. In general, stigma led to higher odds of reporting delay or avoidance of counseling and testing, as well as non-HIV specific services. Statistical significance of relationships varied across type of health service, type of stigma and gender. For example, anticipated stigma was not a significant predictor of delay or avoidance of health services for MSW; however, FSW who anticipated HCW stigma had significantly higher odds of avoiding (ORu2009=u20092.11) non-HIV services, compared to FSW who did not. This paper adds to the growing evidence of stigma as a roadblock in the HIV treatment cascade, as well as its undermining of the human right to health. While more attention is being paid to addressing HIV-stigma, it is equally important to address the key population stigma that often intersects with HIV-stigma.