Description of the condition
First observed in 1981 in the United States, HIV/AIDS has transformed into a global epidemic (UNAIDS 2011). In 2011 alone, an estimated 34.2 million people worldwide were living with HIV/AIDS (UNAIDS 2011). Stigma related to HIV/AIDS was first addressed in a statement at an informal briefing on AIDS to the 42nd Session of the United Nations General Assembly in 1987 (Mann 1988), and there have been a wide range of discussions about effective responses to HIV/AIDS stigma. Despite widespread recognition of the consequences of HIV/AIDS stigma over the first 30 years of the epidemic (Mahajan 2008; Parker 2003; UNAIDS 2011), stigma continues to be an obstacle to HIV prevention efforts (de Bruyn 2004; Rahmati-Najarkolaei 2010; Thi 2008).
Conceptualization of stigma according to Goffman's theory is described as a "dynamic process of devaluation that significantly discredits" an individual from a whole and ordinary person to one tainted (Goffman 1963). On the basis of this traditional perspective, recognition of stigma has increased through various research characterizing it as a social process, including negative social attitudes (perceived stigma) as well as social inequality and discrimination (enacted stigma) towards particular individuals (Corrigan 1999; Pryor 2004). HIV/AIDS-related stigma has been conceptually defined as "a mark of disgrace, which invokes discrimination, prejudice, discounting, discrediting, and negative attitudes, beliefs and behaviours directed at people with or perceived to have HIV/AIDS infection, their families and communities with which they are associated" (Alonzo 1995; Herek 1993; Herek 2007; Parker 2003; Steward 2008). The lack of a comprehensive framework for HIV/AIDS-related stigma precludes meaningful appraisal and comparisons of interventions that target stigma, and limits the ability to design effective programs and interventions.
In the era of the HIV/AIDS epidemic, recent research to better understand the types of HIV/AIDS-related stigma (e.g., enacted, vicarious, felt normative and internalized) has raised awareness of this complex problem (Corrigan 2004).
Discrimination is a type of stigma towards people living with HIV/AIDS, which can be defined as experiences of stigma (enacted stigma), or prejudicial attitudes and behavior based on their HIV status, such as isolation, exclusion, rejection or harm by other people in the community. Discriminatory behavior, such as loss of jobs, exclusion from community activities, loss of social support, problems in accessing health care or even physical violence (i.e., enacted stigma) and threats to personal well-being because of their serostatus (Gostin 1999; Varas-Diaz 2005; Zierler 2000) may impact people living with HIV. Exposure to reported stories of discriminatory behavior (vicarious stigma), awareness of people`s perceptions of stigma (felt normative stigma) as well as self-stigma or believing the stigma surrounding one's own condition (internalized stigma) are also experienced by people living with HIV/AIDS (Steward 2008).
Globally, stigma may arise through a combined interplay of social interaction practices, structural inequality, cultural differences and relation of power (Castro 2005; de Bruyn 2004; Herek 2002; Letamo 2003; Link 2001; Parker 2003; Unnikrishnan 2010). Stigmatization of people living with HIV/AIDS is positively associated with misconceptions about modes of transmission of the disease, lack of HIV knowledge and accurate information, HIV/AIDS serostatus, fears related to its incurability, poorer mental health, as well as discrimination and prejudice towards risky behavior, though it is manifested differently across settings, groups and individuals (Dias 2006; Kalichman 2005; Mahajan 2008; Sengupta 2011). Therefore, identifying risk factors for HIV/AIDS-related stigma is important in confronting perceptions that promote stigmatizing behaviours towards people living with HIV/AIDS (Earnshaw 2009; Nyblade 2009).
People who are HIV-positive or who are perceived to have an HIV infection are affected by stigma (Earnshaw 2009), including children and young adults (Boyes 2012; Reyland 2002). In Brazil, children and young people living with or affected by HIV/AIDS can be denied the right to education and job opportunities (Abadia-Barrero 2006). Experiences of stigma and discrimination are also common in pregnant women, and have been reported as a potential barrier to pregnant women's acceptance of HIV testing in antenatal care (Kilewo 2001; Turan 2011), as well as their initial participation in and adherence to a preventing mother-to-child transmission program (Awiti Ujiji 2011; Bwirire 2008; Mepham 2011; Painter 2005). HIV/AIDS-related stigma is common towards men who have sex with men or gay populations, e.g. in India, the United States and Scotland (Chakrapani 2011; Courtenay-Quirck 2006; Diaz 2001; Flowers 2000; Logie 2012). HIV-positive lesbians, bisexuals and transgender women, e.g. in Canada and India (Chakrapani 2011; Logie 2012a), are also affected by stigma. Researchers have highlighted the urgent need to consider the potential effect of stigma amongst sex workers and the implementation of interventions to reduce stigma (Baral 2012; Biradavolu 2012). Necessary HIV preventive interventions related to negative emotion and its association with drug cravings have also been suggested to address HIV/AIDS-related stigma amongst injecting drug users (Mimiaga 2010; Rudolph 2012).
Stigma related to HIV/AIDS is associated with negative health outcomes, such as lack of access to HIV-related prevention (Mahajan 2008; Piot 2006; Rahmati-Najarkolaei 2010; Sengupta 2011), reduced HIV care-seeking behavior (Sayles 2007), fewer treatment efforts (Bogart 2008) and lack of quality services in many settings (Chakrapani 2011; Fox 2010; Li 2012; Ma 2007; Sayles 2007; UNAIDS 2011; Young 2010).
HIV/AIDS-related stigma can be measured effectively using validated survey instruments (Earnshaw 2009). A number of scales have been developed and tested in multiple settings to measure how the social processes of HIV/AIDS-related stigma affect people living with HIV/AIDS. In Thailand and Zimbabwe, a comprehensive 50-item scale was tested measuring three factors associated with HIV/AIDS stigma including shame, blame and social isolation; discrimination; and equity towards people living with HIV/AIDS (Genberg 2008). Although the scale showed good construct validity and high internal consistency, reporting bias due to self-reported HIV stigma could not be avoided (Genberg 2008). In India, Steward and colleagues developed an HIV stigma scale measuring four components of stigma (i.e., enacted, vicarious, felt normative and internalized) and reported an association between HIV/AIDS-related stigma and disclosure, with disclosure avoidance and depression (psychological distress) found among people living with HIV/AIDS (Steward 2008). In South Africa, Swaziland and the United States, the Internalized AIDS-Related Stigma Scale has been used, with results indicating a significant association between internalized stigma, and depression and social support (Kalichman 2009). This scale was also adopted in Uganda and was found to have high internal validity for measuring the outcomes of HIV/AIDS-related stigma (Tsai 2013). In South Africa, the HIV Stigma-by-Association Scale for Adolescents was adapted to measure stigma and symptoms of depression and anxiety (Boyes 2012). This scale assesses associations between stigma-by-association, bullying, peer problems, depression and anxiety symptoms (Boyes 2012).
Description of the intervention
A variety of specific and general intervention campaigns involving individuals living with HIV have been conducted to reduce HIV/AIDS-related stigma, and several underlying factors that may produce stigma have been addressed (Bellingham 1993; Brown 2003). These interventions have reportedly been effective in improving quality of life among people living with HIV/AIDS and contributing to better health outcomes amongst all populations. In this review, we will focus only on individual interventions that address actionable causes of stigma and discrimination, including behavioral, educational and social interventions in creating awareness of what stigma is, how it manifests, and the resulting negative consequences. It is also interesting to assess the effect of interventions in addressing fears and attitudes of the individual, and their advantages in reducing stigma.
Behavioral intervention efforts have shifted to people living with HIV/AIDS (Earnshaw 2009). "Popular opinion leaders" or peer educators were effective in reducing stigma by improving the attitude and behavior of healthcare providers towards individuals living with HIV in China by focusing on self-protection and occupational safety (Kelly 1991; Li 2013). Education-based interventions, to date, have commonly focused on education workshops, curriculum-based psychosocial support including knowledge of HIV/AIDS transmission and risk behaviours (such as sex outside marriage, having multiple sex partners, substance use, sex work and homosexuality), a preventative vaccine for HIV/AIDS and cultural norms of silence regarding sexuality and sexual practices (de Bruyn 1992; de Bruyn 2004; Liu 2006; Luoma 2012; Parker 2003; Rendina 2012). Interventions that solely target perceptions of and attitudes towards people living with HIV (Abadia-Barrero 2006), provide sensitivity training related to those living with HIV/AIDS or promote tolerance through individual contact with HIV/AIDS-diagnosed individuals (Brown 2003; Herek 2002) are still limited. For example, an AIDS education program developed in a high school in a socioeconomically disadvantaged urban area in South Africa addressed the whole school community and aimed to raise awareness about HIV/AIDS using a variety of educational methods (Kuhn 1994). Community and home-based care interventions using capacity building, care and support, resource mobilization and income generation were effective in increasing better social and environmental relations of people living with HIV/AIDS in Ethiopia (Okello 2012). Skilled birth attendance is one evidence-based intervention amongst pregnant women with HIV/AIDS aimed at improving maternal and infant health. Women who give birth with the assistance of a healthcare professional are more likely to receive information relating to HIV-related healthcare, which can reduce the fear of HIV/AIDS-related stigma that often presents an added challenge for pregnant women (Gabrysch 2009).
How the intervention might work
By decreasing HIV/AIDS stigma, a challenging impediment to public health programs will be overcome, leading to a reduction in further HIV infections, the provision of adequate health care and support as well as mitigating the impact of HIV/AIDS (Brown 2003).
Interventions that aim to reduce HIV/AIDS-related stigma have been measured (e.g. in randomized controlled trials, pre- and post-test studies with a non-randomized control group, or pre- and post-test studies with one-group designs) and HIV/AIDS stigma is one of the assessed outcomes (Sengupta 2011). Statistics that demonstrate pre- and post-intervention changes in HIV/AIDS stigma outcomes have been used to assess the availability of effective interventions to reduce stigma. The extent to which stigma reduction interventions reduce barriers to an array of positive behaviours including HIV testing, harm reduction, treatment adherence support and prevention of mother-to-child transmission have also been determined (Doherty 2006; Kalichman 2003).
Why it is important to do this review
HIV-AIDS stigma continues to be a significant hurdle to effective treatment. The variability of efforts to reduce stigma in cultural and local settings has led to complexity in assessing the extent of HIV/AIDS-related stigma and its impact on the effectiveness of HIV prevention and treatment programs, as well as the effectiveness of interventions to reduce stigma (Wu 2008). These challenges hamper local, national and global efforts to address HIV/AIDS-related stigma (UNAIDS 2011).
Therefore, it is important to conduct a systematic review to quantitatively document the current state of research, with an emphasis on summarizing the established knowledge of effective interventions, including defining, measuring and assessing the impact of HIV-related stigma. This review will act as a valuable resource to translate evidence into practice in the global response to the HIV/AIDS epidemic.