Fuzzy Boundaries in the Conceptualization of HIV Stigma: Moving Towards a More Unified Construct

Currently, there are 36.7 million people living with HIV (PLWH) worldwide (WHO, 2017). HIV-related stigma continues to be a major concern for PLWH in the United States and overseas (Baugher et al., 2017; Bogart et al., 2008; Herek, Capitanio, & Widaman, 2002; X. Li, Wang, Williams, & He, 2009; Odindo & Mwanthi, 2008) with more than 50% of men and women reporting discriminatory attitudes toward PLWH among countries with data available (UNAIDS, 2015). This is particularly disconcerting given that HIV-related stigma has shown to be associated with negative outcomes in the physical and mental health of PLWH, higher levels of HIV stigma being correlated with higher depression symptoms (L. Li, Lee, Thammawijaya, Jiraphongsa, & Rotheram-Borus, 2009; Onyebuchi-Iwudibia & Brown, 2014; Rao et al., 2012), lower adherence to antiretroviral therapy (Katz et al., 2013), and less access and usage of social and healthcare services (Chambers et al., 2015; Rueda et al., 2016). In general, HIV-related stigma has focused on the individual experience of stigma by PLWH and has been conceptualized into three different types (Earnshaw & Chaudoir, 2009; Nyblade, 2006): the fear of negative attitudes, judgment, and discrimination from HIV status and serostatus disclosure (perceived stigma), the acceptance of negative stereotypes associated with HIV as part of the self or identity (internalized stigma), and the actual experience of discrimination by PLWH (enacted stigma).

More recently, some conceptualizations have highlighted the importance of considering HIV-related stigma beyond the individual context as stigma is a social process, a pattern of thoughts, feelings, and behaviors that influence change and growth in society (Deacon, 2006; Link & Phelan, 2001; Mahajan et al., 2008; Parker & Aggleton, 2003). This recent shift has led researchers to propose several revisions to the HIV stigma construct. In particular, they argue that HIV-related stigma should be distinguished from discrimination (Deacon, 2006) and that it should be measured at structural and institutional levels (Link & Phelan, 2001; Mahajan et al., 2008; Parker & Aggleton, 2003). Since the conceptualization of HIV-related stigma has practical implications on how it is studied, measured, and treated, the purpose of this paper is to review the validity of the proposed revisions. It will be argued that despite there being a strong theoretical basis for both changes to the conceptualization of HIV-related stigma, psychometric research suggests that enacted stigma should not be removed from the construct, but that HIV-related stigma should be measured across socio-ecological levels.

Theoretical Implications of HIV Stigma as a Social Process

A majority of the stigma literature derives from the work of sociologist, Erving Goffman. His original theory viewed stigma as a social process (Goffman, 1963), which has important implications on the conceptualization of HIV-related stigma, as research in this area has primarily focused on the construct at an individual level.

Stigma as a Social Process

The conceptualization of HIV-related stigma often departs from the definition proposed by Goffman. Goffman defined stigma as “an attribute that is deeply discrediting” according to society, which diminishes the stigmatized individual from “a whole and usual person to a tainted, discounted one” (Goffman, 1963). Although Goffman acknowledged the role of society in stigmatization, researchers limit their definition of HIV stigma and cite sections from Goffman that emphasize stigma as an internal or individual level construct (Link & Phelan, 2001; Parker & Aggleton, 2003). Notably, they highlight how the “deviant” or “undesirable difference” of stigma leads to the assumption of a “spoilt identity” (Goffman, 1963). This operationalization is significant because it implies that the negative value of stigma comes from the individual instead of society.

Inherent within Goffman’s definition was the understanding that stigma is a socially constructed concept. He qualified that even though stigma would refer to “an attribute” it actually was a “language of relationships” that was required (Goffman, 1963). In other words, Goffman argued that society determines what is “discrediting” and thereby develops a structure that delineates how the bearers of stigma are devalued across their social relationships. Subsequently, similar to development in Bronfenbrenner’s ecosystem theory (1997), stigma could be seen more as a dynamic social process that is constantly changing over time (Parker & Aggleton, 2003).

HIV Stigma and Discrimination

When HIV stigma is considered as a social process, the fuzzy boundary between HIV stigma and discrimination becomes clearer. Discrimination highlights the perpetrators of stigmatization, whereas stigma refers to the targets of these negative behaviors (Link & Phelan, 2001; Mahajan et al., 2008; Sayce, 1998). This distinction is important as it has broader social implications in determining who is responsible for stigmatization (Sayce, 1998). By differentiating HIV-related stigma from discrimination, it focuses the blame on the social processes involved with stigmatization rather than on the individual.

Deacon (2006) also argues how including discrimination within the construct of HIV-related stigma constitutes conceptual inflation. Within the stigma literature, discrimination is operationalized as an end result of stigma (Jacoby, 1994; Nyblade, 2006) such that the term “stigma” becomes synonymous with “both the stigmatizing beliefs themselves and the effects of…stigmatization processes” (Deacon, 2006). This definition limits the understanding about the unique effects of stigma because it becomes unclear whether discrimination mediates the association between stigma and various health outcomes. In all, there is a practical and theoretical basis for differentiating HIV stigma from discrimination.