‘My biggest fear was that people would reject me once they knew my status…’: stigma as experienced by patients in an HIV/AIDS clinic in Johannesburg, South Africa

Abstract

Stigma is not a new concept; however, it remains highly significant in the context of HIV/AIDS in South Africa. There is wide consensus that HIV/AIDS-related stigma compromises the well-being of people living with the disease. This paper is part of a larger study that seeks to understand the social and cultural complexity related to the provision and outcomes of antiretroviral therapy (ART) in South Africa. It explores and analyses how patients on ART perceived and experienced stigma and how it has shaped their behaviour towards, as well as their understanding of the epidemic. The data have been collected by means of in-depth face-to-face interviews, conducted between June and November 2007, with a sample of 44 patients in an HIV/AIDS clinic in a resource-limited setting in Johannesburg, South Africa. The findings reveal that the level of felt and anticipated stigma is intense and affects all dimensions of living with HIV/AIDS, particularly disclosure and treatment. Stigma permeates the experience of HIV-positive people on ART who participated in this study. The intensity of HIV/AIDS-related stigma can threaten to compromise the value of ART, thus impacting on the daily lives of people living with HIV/AIDS (PLWHA). This study suggests that three decades into the epidemic, stigmatisation remains a core feature of the patient experience of HIV/AIDS. In the clinic in which this research was conducted, HIV/AIDS was regarded as a chronic condition increasingly manageable by ongoing access to ART. However, this approach was not shared by many family members, neighbours and employers who held highly stigmatised views.

HIV stigma experiences and stigmatisation before and after an intervention

“…Repeated experiences of abuse and discouragement to participate in treatment programmes and attend care facilities could lead to diminished physical and mental health (Greeff et al, 2008). Isolation or decreased social participation of PLWH stems from living while fearing stigma and thus minimising their exposure to others (Gilbert & Walker, 2010) which in turn leads to poor participation in healthcare as well as in personal and employment relationships . A further outcome of HIV stigma for PLWH relates to self-isolating behaviour to prevent HIV-transmission to others and to minimise secondary (associated) stigma directed at those living close to them (Salter et al, 2010).…”

Factors Associated with Attendance and Non-Attendance of Support Groups among HIV Positive Adults Attending an Antiretroviral Community Clinic at Ekurhuleni District, South Africa

“…Taking into consideration that disclosure of HIV status is inevitable in support groups; individuals may fear social rejection and discrimination [14]. Stigma remains a significant concern within the health care service field across societies and limits the potential value of HIV treatment care and support [20,21].…”

The quality of life of HIV-infected and non-infected women post-caesarean section delivery

“…The results also showed that HIV-infected women were more impaired in terms of the QoL. This could be because HIVinfected women who are already socially excluded by social stigma (Gilbert & Walker, 2010) now have to cope with UI, which can be embarrassing. However, UI can be avoided or corrected, because effective treatments are available (Handa et al 2007;Mantle, Haslam & Barton 2004).…”

“…The authors stated that the decreased societal functioning might be due to cultural and social reactions to the virus (Larrabee et al 1996). Despite the stigma associated with HIV still being rife in South Africa (Gilbert & Walker, 2010), a decrease has been noted (Mall, Middelkoop, Mark, Wood, & Bekker, 2013). The improved social interaction could be due to an increase in knowledge about the virus, resulting from South Africans being more exposed to HIV due to the high prevalence rates (Mall et al 2013) and therefore socially aware of HIV.…”