H/A stigma is considered a major barrier to effective responses to the HIV epidemic. Yet, there is little consensus among policy-makers and program implementers about how best to define, measure, and diminish the phenomenon. In this systematic review of stigma and the HIV/AIDS epidemic, we examined the existing literature on how H/A stigma is conceptualized, the methodologies for measuring stigma, the available data on the relationship of stigma to the effectiveness of HIV prevention and treatment programs, and interventions and programs for reducing stigma. Link and Phelan’s [8
] theory that stigma is the convergence of labeling, stereotyping, separation, and discrimination by a stigmatizers with access to social, political, and/or economic power offers a good starting point for conceptualizing H/A stigma, particularly when the potentiating effects of structural violence [16
] and pre-existing stigmas are accounted for. Though valid measures of stigma that capture perceived and enacted stigma among PLHA as well as stigmatizing attitudes of healthcare workers and the general population are increasingly available, widespread use of the measures in research and program implementation has not yet occurred. Also, few measures of structural or institutional measures of H/A stigma have been developed or rigorously tested. The literature on HIV prevention and treatment programs indicates that stigma does indeed limit uptake of such critical services as PMTCT, testing, and antiretroviral therapy, even as access to such programs has improved with scale-up. Finally, few specific interventions and social programs to reduce H/A stigma have been rigorously evaluated. Perhaps more problematic, most interventions are individual focus, aiming to increase the knowledge and empathy of potential stigmatizers or improving the ability of PLHA to cope with stigma and discrimination. Few social programs that address stigma promulgated by structural and institutional factors were found in the peer reviewed literature.
Prior to describing our recommendations, we highlight two important limitations of this analysis. In this paper, we systematically reviewed the life sciences and biomedical literature, the primary repository of peer-reviewed academic articles on H/A stigma. Although we supplemented the literature from PubMed with references found in the articles as well as relevant grey literature including reports from international organizations, other relevant sources, particularly relating to sociological, policy, and legal analyses, may not have been captured. Similar systematic searches in search engines such as Socio-file and Westlaw should be conducted. A second and related limitation concerns the restricted assessment of discrimination in this review. Due to the already broad scope of the review, discrimination was only examined as it directly relates to stigma. Broader aspects of discrimination pertaining to legal systems and human rights initiatives and their effects on stigma were not explored in depth.
Recommendations For the Way Forward
Based on the literature review and discussion with a multidisciplinary set of HIV/AIDS experts at the 2007 UCLA Social Justice, Human Rights, and HIV Prevention Think Tank, we developed the following recommendations for addressing stigma in the HIV/AIDS epidemic. Due to the multifaceted nature of H/A stigma, these recommendations are intended for the broad array of individuals, communities, and institutions involved in responding to the HIV/AIDS epidemic, including PLHA, researchers, program implementers, and civil society/government leaders. These recommendations are in no way meant to be exhaustive, but rather, represent what we feel are critical next steps for responding to H/A stigma given the current state of the epidemic.
Defining H/A Stigma
Develop a comprehensive conceptual framework for H/A stigma that incorporates both the socio-cognitive and the structural aspects of stigma as well as captures the effects of pre-existing and overlapping stigma related to poverty, race, gender, sexual orientation, etc.
Recent work in the fields of sociology and anthropology has persuasively demonstrated that the process of stigmatization relies as much on socio-cultural processes and power as on the cognitive processes of labeling and stereotyping at the individual level. Conceptualization of H/A stigma to date, however, is mostly based on a socio-cognitive approach. A more complete understanding how H/A stigma manifests and operates in a multifaceted way is integral to developing effective strategies to measure, assess the impact of, and reduce H/A stigma.
Measuring H/A Stigma Whenever applicable, encourage the use of valid and reliable stigma measures by research projects and program implementers
Although stigma is considered one of the greatest challenges to addressing the HIV epidemic, data that accurately describes and quantifies stigma is often not available to program implementers and policy-makers. This type of data is not only important for determining the efficacy of specific stigma reduction interventions, but also crucial to understanding the effect stigma may have on the success of prevention and treatment programs. Consistent and widespread surveillance of stigma utilizing valid measures would also enable program implementers to identify and assist specific at-risk and HIV-positive subgroups who may be experiencing heightened perceived or enacted stigma when accessing prevention and treatment programs.
Support the development of a standardized set of measures for the structural/institutional domains of H/A stigma
Although social and cultural forces in the family, neighborhood, or workplace often play an integral role in systematically discriminating against PLHAs, research on developing measures of stigma has mostly focused on individuals and their potentially stigmatizing attitudes. Policy-makers and funders should support research that aims to develop valid measures of structural and institutional H/A stigma. In addition to enabling a more comprehensive assessment of stigma over time, such measures would help identify and evaluate potential levers to reduce stigma at the structural/institutional level.
Assessing Impact of H/A Stigma on Programs
The following recommendations emerge from stigma related concerns associated with provider-initiated opt-out HIV testing: 1) promote a supportive social and legal framework to minimize unintended consequences of provider initiated opt-out HIV testing, 2) implement stigma reduction interventions among healthcare providers, and 3) support further research on the relationship between stigma and routine HIV testing.
Though H/A stigma is a barrier to accessing the entire spectrum of HIV prevention and treatment services, perhaps the most urgent research questions from a programmatic perspective relate to how the stigma of HIV testing can be overcome, particularly in generalized epidemics where fewer than 15% of the population has ever been tested [63
]. HIV testing is the primary gateway to both prevention and treatment services. While provider initiated opt-out testing as recommended by the W.H.O. and UNAIDS is likely to increase the numbers of people tested [63
], data from Botswana indicates that some people may avoid going to the doctor out of fear of testing and women who are tested may be subject to intimate partner violence [61
], suggesting that prevailing stigma in the general population leads to unintended but significant consequences. Policy-makers and civil society should encourage community preparedness and social mobilization as well as engage relevant legal and public service organizations to minimize these unintended consequences. Provider-initiated programs also underscore the problem of stigmatizing attitudes of healthcare providers [64
] and the potential for coercion of patients to test. As provider initiated testing is rolled out, program implementers should institute specific stigma reduction interventions for healthcare providers and ensure consistent monitoring and evaluation of the opt-out testing process. Finally, further research on how stigma effects and is affected by provider initiated testing programs is needed both in real time and in the long run to identify potential adjustments to enhance uptake of testing and novel social consequences of the program.
Promote and document the ‘virtuous social cycle’ that access to antiretroviral therapy provides for stigmatized individuals by 1) linking the rollout of treatment programs with community level stigma reduction interventions and 2) measuring stigma longitudinally as universal access and utilization is achieved.
By treating visible signs of disease and enabling PLHA to return to socially and economically productive lives, antiretroviral therapy can trigger a ‘virtuous social cycle’ [16
]. However, access to therapy alone is often not sufficient to ensure improvement in the lived experiences of PLHA, due to persistent social stigma as well as the attendant challenges of adhering to pill-taking and following up at provider appointments in the setting of limited social support. Policy-makers and program implementers should link treatment programs with specific interventions to empower PLHA to cope with disclosure of HIV status to a trusted family member or friend as well as maintain or re-integrate into family and community life while on therapy. Rollout of antiretroviral therapy should also be accompanied with specific social marketing and mass media campaigns to address stigmatizing attitudes and stereotypes in the general population.
Reducing H/A Stigma
Promote reform of laws and policies that enable stigma and discrimination of men who have sex with men (MSM), injecting drug users (IDUs), commercial sex workers (CSWs), and migrants.
Current law and policy in many countries directly contribute to and/or exacerbate pre-existing stigma and discrimination associated with at-risk groups. Pre-existing stigma not only predisposes these vulnerable individuals to greater H/A stigma and discrimination, but also critically reinforces stereotyping and status loss of all afflicted with HIV/AIDS, regardless of how they may have acquired the infection. Funders and civil society should support advocacy groups that promote the repeal of laws and policies that criminalize consensual homosexual activity, prohibit syringe possession and needle exchange [86
], facilitate violent policing of CSWs [87
], and require proof of residency status to access services. On the other hand, where protective legislation on HIV/AIDS discrimination is in place, support for enforcement and targeted information campaigns for stakeholders about rights afforded by such legislation should be provided. The work of the Lawyer’s Collective HIV/AIDS Unit [88
], an Indian non-governmental organization engaged in a variety of legal and policy activities to secure and protect the rights of PLHA as well as groups vulnerable to HIV infection, is a good example of the kind of sustained advocacy needed at the structural level while stigmatizing attitudes and norms about HIV/AIDS at the individual level are addressed.
Develop and implement community-based interventions that are designed to mobilize PLHA and the range of other sympathetic social actors (opinion leaders, clergy, etc) to address maladaptive self-stigmatizing behaviors and to advocate against discrimination in the wider community.
Approaches to reducing stigma must be multifaceted and multilevel. Multifaceted to account for the range of stigmatizing conditions that track with HIV/AIDS stigma. Multilevel to account for individual and structural levels of stigma and discrimination. Parker and Aggleton persuasively argue that stigma and stigmatization function at the intersection between culture, power, and difference, and thus, are central to establishing the prevailing social order [5
]. Thus, interventions based on community organizing and building among PLHA as well as potentially sympathetic social and community entities, that aim to ‘unleash the power of resistance on the part of the stigmatized,’ are important avenues for the root causes of H/A stigma and discrimination [5