Reducing Stigma and Discrimination
"...Three decades into the epidemic, stigmatization remains a core feature of the patient experience of HIV/AIDS" (Gilbert and Walker, 2010: 144). Or as one woman living with HIV in Thailand put it: "It does not matter how many thousand people have HIV/AIDS... I would say that only zero percent will accept people living with HIV/AIDS" (Liamputtong et al., 2009: 865). Stigma and discrimination have been identified as tremendous barriers to addressing HIV/AIDS (Carr et al., 2010; ICRW and LSHTM, 2010; Stangl et al., 2010; MacQuarrie et al., 2009; Mann, 1999; Paxton et al., 2004a; Paxton et al., 2004b). Stigma was defined by Goffman as a discrediting attribute about an individual or group that serves to devalue that person or group in the eyes of society (Goffman, 1963). Regarding HIV and AIDS, Jain and Nyblade describe a number of types of stigma, including anticipated stigma, experienced stigma, secondary stigma, internalized stigma, compound/layered stigma, and observed stigma (Jain and Nyblade, 2012). Deacon et al. suggest "that it is vital to distinguish between what we call HIV/AIDS stigma (negative things people believe about HIV/AIDS and people living with HIV/AIDS), and what we call discrimination (what people do to unfairly disadvantage people living with HIV/AIDS)" (Deacon et al., 2005: ix). The authors add that "Stigma does not always have to result in discrimination to have a negative impact [and that] discrimination can result from stigma but could also stem from [other factors]" (Deacon et al., 2005: ix). Parker et al. suggest that stigmatization and discrimination are manifest in a number of contexts, including within families, communities, schools, employment, travel/migration opportunities, health care settings, and HIV/AIDS programs (Parker et al., 2002). Hardee et al. found remarkably consistent views related to people living with HIV and AIDS in a national survey in China, suggesting that stigma and discrimination can be pervasive in societies (Hardee et al., 2009b).
Stigma Affects Prevention, Treatment and Care Behaviors
"No matter where I go, there's always someone who will reject me." --HIV-positive woman, Cuba (Castro et al., 2007: S52)In a review of interventions to reduce HIV/AIDS stigma, Brown et al. noted that stigma affects prevention behaviors, test-seeking, care-seeking, quality of care provided to HIV-positive clients, and perceptions and treatment of people living with HIV and AIDS by communities and families (Brown et al., 2003).
Externalized and internalized stigma deters people from accessing needed HIV services (Brouard and Wills, 2006) or engaging in protective behavior, as well as delaying treatment, impeding adherence to medication, reducing survival and other HIV outcomes (ICRW and LSHTM, 2010). HIV-related stigma negatively impacts the quality of life of people living with HIV (MacQuarrie et al., 2009). A study in India found stigma correlated with disclosure avoidance and depression (Steward et al., 2011). In addition to decreasing the ability to implement effective HIV/AIDS responses, stigma leads to violations "of human rights. People living with HIV are often turned away by their partners, family members and relatives, community members; are rejected by health care workers; are discriminated against in employment; are evicted from their homes, are subjected to physical abuse" (Hossain and Kippax, 2011: 172). A study of 460 youth in Ghana found that higher stigmatizing attitudes were associated with reduced safety in intended sexual behavior through reduced perceptions of vulnerability to HIV acquisition (believing that HIV only happens to other stigmatized populations). Girls were more likely than boys to blame others (Riley and Baah-Odoom, 2010).
Layered Stigma Compounds the Effects on People Living with HIV and AIDS
Layered stigma makes it even more difficult for individuals who are most at risk for HIV to access services etc. Parker et al. contend that HIV/AIDS-related stigma is often layered upon other stigma, for example, that HIV is associated with engaging in illegal behavior such as sex work and drug use (Parker et al., 2002). A study in China with 10 AIDS health professionals and 21 adults living with HIV found that the Chinese public assumes that any woman who has HIV is a sex worker (Zhou, 2008). A study of Japanese managers in Thailand found that they only believed that workers, sex workers and those they defined as "others" were at risk for acquiring HIV (Michinobu, 2009).
Women Face Double Stigma
Women face multiple stigmas - stigma and discrimination associated with HIV and their inferior status to men in society (Peters et al., 2010b). [See also Transforming Gender Norms] Yet, many studies of stigma and discrimination do not collect sex-disaggregated data, making it difficult to determine differential experiences that men and women face.
For some, though, the gender differences in stigma are clear. A 2010 study in Ethiopia with 3,353 people living with HIV found that women were more heavily stigmatized. In addition, women were more likely to drastically change their goals upon learning their HIV status to include not having sex, not getting married and not having children (IPPF et al., 2011).
"Men are forgiven. Women would not be forgiven. Women are blamed even if they are unlucky and sleep with a husband who used to sleep with many girlfriends or is an injecting drug user and brought the disease to his wife" --HIV-positive man who is an injecting drug user (Nguyen et al., 2009: 146)
Findings from a qualitative research study conducted in 2003 in Vietnam found that "women living with HIV and AIDS tend to be more highly stigmatized than men... While women tend to be 'blamed' for acquiring HIV and AIDS, men are often forgiven by family and society. The consequences of stigma are also more severe for women, who are more frequently sent away from their families and separated from their children than men are" (Hong et al., 2004: 2). A qualitative study conducted from 2001 to 2003 in rural and urban Ethiopia, Tanzania, and Zambia with structured text analysis of more than 650 interviews, and 80 focus group discussions, and a quantitative analysis of 400 survey respondents found that "constraints are particularly acute for young, married women with HIV who try to balance the stigma of being HIV-positive with the reality that childbearing is often their only route to social status and economic support" (Nyblade et al., 2003: 51).
Misconceptions About HIV Continue to Drive Stigma and Discrimination
Inadequate information about how HIV is transmitted contribute to stigmatization and discrimination faced by people living with HIV. For example, findings from a qualitative research study conducted in 2003 in Vietnam found that lack of detailed understanding of the routes of HIV transmission led to isolation and rejection of people living with HIV and AIDS, avoidance of their goods and services, and secondary stigma against their family members and children. Further, many families of people who live with HIV or AIDS take unnecessary 'preventive' measures, such as eating separately, adding needlessly to the already significant emotional, economic and time-related burdens of care-giving (Hong et al., 2004). In Mali, "...the fact that social transmission (through sharing of food, bowls, latrines, blankets and clothes) was widely thought to be feasible is probably related to the perceived need to quarantine suspected AIDS cases..." (Castle, 2004: 6). It's critical to educate parents and teachers so they can accurately educate young people as well. Interviews and focus groups in Mali found that three-fourths of the teachers in the study held mistaken beliefs about methods of HIV transmission that they then communicated to their students (Castle, 2004). [See also Advancing Education and Prevention and Services for Adolescents and Young People]
Stigma Affects Access To and Use of Treatment
"In the community, few people accept HIV-positive mothers. They think you are HIV-positive because you were just moving around and sleeping with a lot of men. They keep gossiping about you. Some even do witchcraft against you so you die faster. It is thus better that you keep your HIV status for yourself without telling others." --HIV-positive woman tested in a PMTCT program in Malawi (Bwirire et al., 2008: 1197) With the introduction and expansion of antiretroviral treatment, there was hope that stigma and discrimination would decline, however, "despite ongoing research, there is not yet conclusive evidence to support this hope" (Gruskin et al., 2007b: 12). What is clear is that reducing stigma improves quality of life for women living with HIV, especially in the realms of employment and schooling, in addition to improving quality of life within families and communities. In-depth interviews with 30 women living with HIV in Uganda found that women who publicly disclosed their HIV status acted as advocates for people living with HIV and viewed themselves as important sources of support for those newly diagnosed as HIV-positive (Medley et al., 2009b). As one Indian woman living with HIV pointed out: "...I met many men who were infected by women, but I didn't see them blaming the women. I also saw many women who were infected by their husbands, but they never blamed them! ...Then I started to see that, okay, the infection can come from anyone... if you know that the infection can come from anyone, then no one can blame or shame anyone else" (De Souza, 2010: 248).
A study in South Africa found that some would travel 1,200 kilometers to access antiretroviral therapy instead of in nearby communities in order to reduce stigma both for the patient and her family: "...I travel from Port Elizabeth to Johannesburg to receive my medication to spare my mother the shame in the community..." (Gilbert and Walker, 2010: 143). A study in Russia found that in a sample of 492 people living with HIV (252 male and 238 female), greater perceived discrimination predicted lower condom use (Amirkhanian et al., 2011).
A survey of 14,203 participants in Tanzania, Zimbabwe, South Africa and Thailand found that negative attitudes towards people living with HIV was related to lack of knowledge of antiretroviral therapy. Insufficient ARV coverage in a high prevalence setting may contribute to persistent discrimination towards people living with HIV (Genberg et al., 2009; Maughan-Brown, 2010).
A study of 800 people living with HIV in Zambia found that stigma was the single strongest predictor of not accessing antiretroviral therapy, fearing that if they went to the clinic, people would not like them (Fox et al., 2010a). Data from 1,457 people living with HIV taking antiretroviral therapy in Lesotho, Malawi, South Africa, Swaziland and Tanzania found that a significant relationship between perceived HIV stigma and self-report of missed medications over time (Dlamini et al., 2009). A study in Uganda found that females and those who had been on antiretroviral therapy longer experienced higher levels of stigma (Nattabi et al., 2011). However, a study of 277 Mozambican patients found no change in stigma one year after initiating antiretroviral therapy (Pearson et al., 2009).
Religious Institutions Can Combat or Perpetuate Stigma
A review found that religious institutions have played both a supportive and detrimental role towards people living with HIV (Mbonu et al., 2009). Another study found that religious leaders promoted stigma against those living with HIV (Rios et al., 2011) and may need training so as not to perpetuate stigma (Ansari and Gaestel, 2010). A recent review of 36 studies of the role of church groups in stigma found that "in many settings church teaching are actively contributing to the perpetuation of gendered inequalities... through emphasizing heterosexual marriage [and] limiting people's (especially women's) knowledge of HIV/AIDS" (Campbell et al., 2011a: 1212). At the same time, churches provide care and support for those who are HIV-positive and emphasize the care of orphans as a religious responsibility. In some settings, people living with HIV "derived great comfort from their ability to confide in God... a level of social support they were not getting elsewhere" (Campbell et al., 2011a: 1214).
A study in Mozambique with 522 unmarried youth between the ages of 12 and 28, with 352 young men, found that young men who were religiously affiliated were less likely to have stigmatizing attitudes, offering to buy food from someone HIV-positive, be friends with someone HIV-positive and/or agree that HIV-positive teachers should be allowed to continue teaching. However, the link between religious affiliation and stigma reduction was not observed for female youth. This may be explained by the increased opportunities for male youth to go to school past grade 5, with educational opportunities of this age mostly available in religious schools (Noden et al., 2010).
Interventions to Address Stigma and Discrimination are Needed at Multiple Levels
Interventions to combat stigma should include interventions for individuals, which create awareness of what is stigma, address fears and attitudes for the individual, and the benefits of reducing stigma, environmental interventions, i.e., meeting the need for information, supplies and training; and structural interventions, i.e., addressing policies and laws (Nyblade, 2009). [See also Advancing Human Rights and Access to Justice for Women and Girls] Interventions should address three actionable drivers of stigma and discrimination, namely, 1) creating awareness; 2) deepening understanding of HIV transmission to address fears of casual transmission; and, 3) addressing socially driven stigma and discrimination. "Understanding the association of HIV and AIDS with assumed immoral and improper behaviors is essential to confronting perceptions that promote stigmatizing attitudes towards individuals living with HIV" (Nyblade et al., 2009: 4).
Evidence for Successful Interventions to Reduce Stigma Are Desperately Needed
A 2008 review of published literature on stigma in the HIV/AIDS epidemic that included 390 articles, of which 176 were either global in scope or were in a developing country context, found that "there are only a small number of published studies on interventions and programmes designed to reduce HIV/AIDS stigma" (Mahajan et al., 2008: S74). An earlier review in 2003 found that among 22 relevant studies, "No study looked at different messages that could be tailored to men and women, nor were there any efforts to compare differential impact of male versus female contacts for different gendered audiences" (Brown et al., 2003: 66). The authors of a systematic review conducted in 2009 remarked that "the paucity of good quality studies within the last 20 years identified in this review reveals the current gap in evidence-based interventions to reduce HIV/AIDS stigma" (Sengupta et al., 2011: 1084). International AIDS conferences over the years have offered tantalizing glimpses into potentially successful, yet unpublished interventions, for example, programs to reduce stigma and discrimination in the workplace (Singh, 2008; Pramualratana, 2008) and health care settings (James et al., 2004).
The Commission on AIDS in Asia reviewed more than 5,000 papers; commissioned 30 papers; surveyed 600 members of civil society; conducted five country missions and held two sub-regional workshops and concluded that it is crucial to "avoid programmes that accentuate AIDS-related stigma... Such programs may include 'crack-downs' on red-light areas and arrest sex workers, large-scale arrests of young drug users under the 'war on drugs' programs and mandatory testing for HIV" (Report of the Commission on AIDS in Asia, 2008: 17).
Improvements in stigma can be generated from legal protections against discrimination, and advocacy can foster positive changes in laws and policies (ICRW and LSHTM, 2010; Carr et al., 2010). [See Advancing Human Rights and Access to Justice for Women and Girls]
[See also Meeting the Sexual and Reproductive Health Needs of Women Living With HIV, Safe Motherhood and Prevention of Vertical Transmission , and Structuring Health Services to Meet Women’s Needs for further discussion of stigma as it relates to those topics.]