A comparison of HIV/AIDS-related stigma in four countries: Negative attitudes and perceived acts of discrimination towards people living with HIV/AIDS☆
Introduction
Health-related stigma is defined by Weiss, Ramakrishna, and Somma (2006) as “a social process, experienced or anticipated, characterized by exclusion, rejection, blame or devaluation that results from experience, perception or reasonable anticipation of an adverse social judgment about a person or group” (Weiss et al., 2006). Historically, illnesses most likely to induce stigmatizing attitudes are those characterized as difficult to conceal, disruptive or intrusive to daily living, manifested with disfiguring or visibly displeasing qualities, incurable and progressive, and with a high propensity for transmission, qualities which to varying degrees describe the stages of HIV/AIDS (Herek, 1990). However, these characteristics are not necessary or sufficient to explain illness-related stigma, as in the case of epilepsy which is non-progressive and HIV which is almost entirely asymptomatic prior to the onset of AIDS.
HIV/AIDS-related stigma and discrimination have had a substantial impact on people living with HIV/AIDS (PLHA) and those at risk of HIV infection. HIV-related stigma has been shown to act as a barrier to HIV voluntary counseling and testing (VCT) as well as to the effectiveness of prevention and care services (Boer and Emons, 2004, Carr and Gramling, 2004, Doherty et al., 2006, Kalichman and Simbayi, 2003, Thomas et al., 2005, Turan et al., 2008). Often these barriers are most profound in settings with limited access to antiretroviral therapies (ARVs). Previous research demonstrated that access to ARVs reduces HIV/AIDS-related stigma (Abadia-Barrero and Castro, 2006, Castro and Farmer, 2005, Wolfe et al., 2008). As ARV programs continue to scale-up and access to therapies increases worldwide, it is crucial to consider the role of HIV/AIDS-related stigma in the design and implementation of effective prevention and treatment programs.
There has been substantial research on HIV-related stigma in settings with concentrated epidemics where layered stigma, that is, stigma compounded with other socially stigmatized conditions, has most often been observed. Layered stigma is prominent worldwide among men who have sex with men and injection drug users, compounding negative social norms surrounding behaviors linked with HIV infection (Herek, 1990, Nyblade, 2006). Less is known about the features of HIV-related stigma in generalized epidemics. While not as closely linked to the layered stigma observed in concentrated epidemics, HIV-related stigma may still be heightened in populations vulnerable to the historical and socioeconomic processes shaping the social inequalities fueling HIV/AIDS epidemics and influencing access to and use of prevention, treatment and care services (Castro & Farmer, 2005).
Several instruments have been developed to measure self-reported HIV/AIDS stigma among PLHA (Berger et al., 2001, Holzemer et al., 2007, Kalichman et al., 2009). However, measuring HIV/AIDS-related stigma from the perspective of the general population with survey methods has been a challenge to the scientific community, with only a few scales implemented across multiple contexts (Nyblade, 2006). In past quantitative studies of stigma in multiple settings, there have not been direct comparisons across epidemiologic or cultural contexts (Kalichman et al., 2005, Reidpath et al., 2005). Although some authors have argued that HIV/AIDS-related stigma should be measured using scales designed specifically for a given culture (Weiss et al., 2006), this limits comparability across sites. Others have argued that stigma stems from a similar underlying construct and can, therefore, be measured across cultural contexts (Van Brakel, 2006).
Studies must consider the multi-faceted nature of HIV/AIDS-related stigma and attempt to measure the distinct components of stigma and their differential impacts. Recent arguments have been made to incorporate discrimination as a component of HIV/AIDS-related stigma (Mahajan et al., 2008, Maluwa et al., 2002, Nyblade, 2006). Obermeyer and Osborn (2007) noted the difficulties associated with measuring self-reported discriminatory behaviors; this challenge may be addressed by assessing perceptions of discriminatory actions faced by PLHA in respondents' environments. Prior qualitative research in Sub-Saharan Africa has focused on HIV-related discrimination (Dlamini et al., 2007, Kohi et al., 2006), but to our knowledge there have been no efforts to quantitatively measure both HIV/AIDS-related stigmatizing attitudes and discrimination among the general population.
The data presented here are from U.S. National Institute of Mental Health (NIMH) Project Accept, a four-country HIV prevention trial in Tanzania, Zimbabwe, South Africa, and northern Thailand (Khumalo-Sakutukwa et al., 2008). The context of the HIV/AIDS epidemic is distinct in each of these settings. The epidemic in Thailand is primarily concentrated among sex workers, men who have sex with men and injection drug users (Chariyalertsak, Aramrattana, & Celentano, 2008), while in the Sub-Saharan African settings, the epidemic is generalized in the adult population and has been present much longer than it has been recognized as a public health problem (Beyrer, Davis, & Celentano, 2008). Further, while the HIV prevalence in Chiang Mai Province in 2005–2006 was estimated to be below 2%, there was a range of HIV prevalence in the African sites, from 7 to 10% in the Kisarawe District of Tanzania, to 15% in the Gauteng Province of South Africa, to between 18 and 20% in the Mutoko District of Zimbabwe, to a high of 39% among women attending antenatal care in the KwaZulu Natal Province of South Africa (Genberg et al., 2008, Genberg et al., 2008). Within the African sites, the resources devoted to stemming the epidemic varied substantially, with the greatest monetary resources and programmatic efforts mounted by South Africa, despite political debate surrounding the national response to HIV in this country (McIntyre, de Bruyn, & Gray, 2008), followed by Tanzania and trailed by Zimbabwe. In contrast, the Thai national response in terms of HIV prevention among sex workers and provision of ARVs has been substantial (Chariyalertsak et al., 2008). Finally, the study settings represent diverse population and cultural profiles, with four of the five study communities in rural or semi-rural areas (the exception being urban Soweto).
This paper presents an assessment of HIV/AIDS-related stigma and discrimination from household probability samples in these four countries. We analyzed two components of HIV-related stigma (negative attitudes and perceived acts of discrimination towards PLHA) by history of prior HIV testing, knowledge of ARVs, and communication regarding HIV/AIDS. We hypothesized a priori that individuals with no history of HIV testing, no knowledge of ARVs and no history of communication about HIV/AIDS would hold more negative attitudes towards PLHA. We further compared the distributions of these two components across the five research sites and hypothesized that the distinct epidemiologic contexts, combined with the varying availability resources across these five sites, would be associated with differences in the observed HIV/AIDS-related stigma and discrimination perceived and expressed by individuals living in these settings. Specifically, we hypothesized that individuals in sites with lower HIV prevalence would express higher levels of negative attitudes towards PLHA than those living in higher prevalence settings, while individuals living in areas with greater availability of resources would convey lower levels of perceived discrimination towards PLHA.
Section snippets
Methods
The methods of this survey have been reported in detail elsewhere (Genberg, Kulich et al., 2008). Briefly, the Project Accept baseline survey was conducted in 48 communities in 5 sites: Chiang Mai Province, Thailand (14 communities); Mutoko District, Mashonaland East Province, Zimbabwe (8 communities); Kisarawe District in the Pwani region of Tanzania (10 communities); Vulindlela, KwaZulu Natal Province (8 communities), and Soweto, Gauteng Province, South Africa (8 communities). Data were
Sample demographic and behavioral characteristics
Table 1 presents the socio-demographic characteristics of the sample. The overall median age was 24 years and over 44% were male. Behaviors and knowledge related to HIV/AIDS varied across the five sites and were presented previously in detail (Genberg, Kulich et al., 2008). In all sites, 32.8% reported ever having been tested for HIV, ranging from 9.4% in Zimbabwe to 49.1% in Soweto. On average, 53.3% had heard of ARVs, ranging from 28.3% in Zimbabwe to 75.5% in Soweto. The majority (69%) had
Discussion
The findings address two components of HIV/AIDS-related stigma and discrimination in five distinct cultural and epidemiologic settings. The inclusion of perceived discrimination towards PLHA in this analysis fills a gap in the existing literature (Nyblade, 2006, Obermeyer and Osborn, 2007). The ecological analyses provided additional context for the interpretation of the results across the five research sites.
Despite the differences in negative attitudes towards PLHA and perceived
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We thank the communities that partnered with us in conducting this research, and all study participants for their contributions. We also thank the Project Accept (HIV Prevention Trials Network, protocol 043) Steering Committee (Tom Coates, Deborah Donnell, Glenda Gray, Michal Kulich, Steve Morin, Linda Richter, and Michael Sweat), project directors (Kathryn Curran, Surinda Kawichai, Alfred Timbe), study staff and volunteers at all participating institutions for their work and dedication.