Stigma rises despite antiretroviral roll-out: A longitudinal analysis in South Africa

Abstract

Stigma is a recognised problem for effective prevention, treatment, and care of HIV/AIDS. However, few studies have measured changes in the magnitude and character of stigma over time. This paper provides the first quantitative evaluation in Africa of the changing nature of stigma and the potential determinants of these changes. More specifically, it evaluates the dynamic relationship between stigma and (1) increased personal contact with people living with HIV/AIDS and (2) knowing people who died of AIDS. Panel survey data collected in Cape town 2003 and 2006 for 1074 young adults aged 14–22 years were used to evaluate changes in three distinct dimensions of stigma: behavioural intentions towards people living with HIV/AIDS; instrumental stigma; and symbolic stigma. Individual fixed effects regression models are used to evaluate factors that influence stigma over time. Each dimension of stigma increased in the population as a whole, and for all racial and gender sub-groups. Symbolic stigma increased the most, followed by instrumental stigma, while negative behavioural intentions showed a modest increase. Knowing someone who died of AIDS was significantly associated with an increase in instrumental stigma and symbolic stigma, while increased personal contact with people living with HIV/AIDS was not significantly associated with any changes in stigma. Despite interventions, such as public-sector provision of antiretroviral treatment (which some hoped would have reduced stigma), stigma increased among a sample highly targeted with HIV-prevention messages. These findings emphasise that changes in stigma are difficult to predict and thus important to monitor. They also indicate the imperative for renewed efforts to reduce stigma, perhaps through interventions to weaken the association between HIV/AIDS and death, to reduce fear of HIV/AIDS, and to recast HIV as a chronic manageable disease.

Introduction

HIV-related stigma is universal, pervading all regions of the globe (Aggleton & Parker, 2002). Stigma can, among other things, discourage people from being tested, impede access to treatment and other health care services, undermine adherence to treatment, and discourage disclosure to sexual partners (Herek et al., 2003, Kalichman and Simbayi, 2006, Rao et al., 2007, Wolfe et al., 2006). Combating stigma is thus widely recognised as a key ingredient in the struggle against HIV and AIDS, and for improvements in public health in general (Aggleton, Parker, & Maluwa, 2003). This is especially pertinent in sub-Saharan Africa, the epicenter of the disease, where prevalence rates are the highest in the world (UNAIDS, 2006, Whiteside, 2008).

However, despite widespread awareness of the negative impact of stigma, advances in public health programmes to address stigma have been comparatively slow and unsystematic (van Brakel, 2006). In particular, very little is known about how stigma changes over time and the factors that might influence such change. This information is important as researchers designing stigma intervention strategies need to be cognisant of, and responsive to, the changing social context for people living with HIV or AIDS (PLWHA). As the epidemic matures the social context will change as a result of social responses to HIV prevention and treatment interventions. Research into the dynamics of such changes is rare (see Herek & Capitanio, 1999 for one example in the United States). There is clearly an urgent need to measure changes in the magnitude and character of social attitudes towards PLWHA and evaluate how these attitudes shift in response to stigma, treatment and prevention interventions (Weiss, Ramakrishna, & Somma, 2006).

Stigma refers to a social process through which individuals are devalued on the basis of particular negatively perceived characteristics or status. HIV-related stigma is amenable to change because the meanings attached to HIV/AIDS and its symbolic representations shift over time. The development of effective treatment has, for example, been seen as contributing to the reduction in stigmatising attitudes and behaviours towards certain diseases (Weiss & Ramakrishna, 2006). Highly Active Antiretroviral Therapy (HAART) has the potential to change the perception of AIDS as a death sentence, and thereby reduce stigma (Preston-Whyte, 2003). Access to HAART is believed, for example, to have lessened HIV-related stigma in Haiti (Farmer et al., 2001), among adolescents in Brazil (Abadía-Barrero & Castro, 2005), and in villages in rural China (Cao, Sullivan, Wi, & the China CIPRA Project 2 Team, 2006).

South Africa's public-sector HAART programme was launched in most provinces in 2004 and had been piloted in the Western Cape since 2001. By 2006, HAART coverage in the Western Cape was at 55.7% of the number of people estimated to need HAART (Nattrass, 2007, p. 131).

One would expect this to have had some effect on reducing HIV-related stigma over time – especially between 2003 and 2006. However, Herek (2002) warns that while disease stigma historically decreases as the disease is better understood and as treatment becomes available, this appears not always to be the case with regard to HIV/AIDS. Herek suggests that the general public remains poorly informed about HIV and that the scientific information about HIV is simply not trusted by some sectors of the public, which are perhaps influenced by political figures who openly question the science around antiretrovirals.

The efficacy of HAART to reduce stigma may also have been undermined by the lack of full HAART coverage in South Africa, which has resulted in continual increases in AIDS deaths. AIDS-related deaths have continued to rise but at a slower rate than before the introduction of HAART. Nonetheless there remains an association between HIV and death which might fuel stigma.

Another theory is that levels of stigma will be associated with HIV-prevalence levels: based on the contact hypothesis (see Herek & Capitanio, 1997) prejudice is believed to decrease with increased direct contact with members of the stigmatised group. A study conducted in rural China found supporting evidence for this theory: villages where HIV prevalence was high were associated with lower levels of stigma (Cao et al., 2006). In Kenya, Hamra et al. also found that personal acquaintance with PLWHA was associated with fewer manifestations of HIV-related stigma (Hamra, Ross, Orrs, & D’Agostino, 2006). Given that HIV prevalence has increased in the Western Cape since 2000 (Actuarial Society of South Africa, 2005) stigma should, accordingly, have decreased as a result. This would be the case among the black population in particular as prevalence rates among this group increased the most and presumably are associated with greater personal contact.

However, Almeleh’s (2006) finding that PLWHA in South Africa generally do not disclose until they are manifestly sick raises the possibility that the increase in the number of AIDS-sick people, especially among blacks (Actuarial Society of South Africa, 2005), results in more people becoming aware of the negative aspects of HIV, and this could result in the perpetuation of stigma. The South African National HIV Prevalence, HIV Incidence, Behaviour and Communication Survey in 2005 found some evidence for this with a positive correlation between negative attitudes and close contact to PLWHA (Shisana et al., 2005).

It is clear that the social context surrounding HIV/AIDS in the Western Cape has changed in the past few years, as a result of increasing numbers of AIDS-related deaths on the one hand and drastic improvements in health due to the HAART roll-out on the other (Coetzee et al., 2004). It is not clear, however, how stigmatising attitudes and behaviours have changed in response. This paper fills an important gap in research on HIV-related stigma by using individual-level panel data to discern and quantify trends in stigma among young adults in Cape Town, and by examining potential determinants of these changes.