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.
HIV Stigma at the Structural Level
Since Goffman, researchers have expounded upon the sociological aspects of his theory to include the structural conditions that influence stigma. Link and Phelan (2001) describe how stigmatization can only occur when “labeling, stereotyping, separation, status loss, and discrimination” happens within the context of an imbalance in power. In other words, all individuals, including those that are stigmatized, can engage in processes related to the stigmatization. Link and Phelan (2001) discuss an example where an individual with mental illness could stereotype one of their clinicians as a “pill-pusher.” While the person might treat the clinician differently on the basis of this stereotype, without any economic, social, cultural, and political power, the individual cannot enact detrimental consequences against the clinician, and therefore the clinician and his or her identifying group would not be stigmatized (Link & Phelan, 2001).
For PLWH, Parker and Aggleton (2003) further specify that stigmatization is not only contingent upon these social inequities, but that stigma also serves to strengthen and perpetuate differences in structural power and control. In particular, they argue that stigma increases existing power differentials through devaluing groups and heightening the feelings of superiority in others. In recognizing that stigma functions at structural and institutional levels, Park and Aggleton (2003) believe that stigma is a central component in Based on these theories, it has been proposed that HIV stigma be measured at the structural and institutional level (Mahajan et al., 2008).
Measurement of HIV Stigma
Knowledge and understanding about HIV stigma is predicated on researchers’ ability to reliably and accurately measure the construct. In turn, even though there is theory to support the differentiation of HIV stigma from discrimination and the measurement of HIV stigma at the structural level, a review of relevant psychometric research is necessary to validate these revisions to the HIV-related stigma construct.
HIV Stigma Scale
The HIV Stigma Scale developed by Berger, Ferrans, and Lashley (2001) is the most commonly used stigma measure for PLWH (Sayles et al., 2008). It has a total of 40 items scored on a Likert scale from 1 (strongly disagree) to 4 (strongly agree) with higher scores indicating higher levels of stigma. The internal consistency of the measure has been reliable with different populations, including African Americans (Rao, Pryor, Gaddist, & Mayer, 2008; Wright, Naar-King, Lam, Templin, & Frey, 2007) and PLWH in rural New England (Bunn, Solomon, Miller, & Forehand, 2007). More recently, the HIV Stigma Scale was adapted for use in South India and demonstrated high reliability and validity (Jeyaseelan et al., 2013).
Psychometric Evidence for Measuring HIV Stigma as a Social Process
Construct validity for the HIV Stigma Scale is supported by associations with related measures (Berger, Ferrans, & Lashley, 2001). In terms of measuring HIV stigma as a social process, the total HIV stigma scores and the subscale scores on the HIV Stigma Scale show moderate negative correlations with social support availability, social support validation, and subjective social integrations, as well as moderate positive correlations with social conflict. Similar relationships were found between HIV stigma and social support in a meta-analysis by Rueda et al., (2016), higher HIV stigma being associated with lower social support across studies. Overall, there seems to be preliminary evidence that HIV stigma should be conceptualized as a social process.
Psychometric Evidence against Chancing the Current Construct of HIV Stigma
Through exploratory factor analysis, Berger et al., (2001) determined that there were four interrelated factors from the HIV Stigma Scale: personalized stigma, disclosure concerns, concern with public attitudes toward people with HIV, and negative self-image. These factors could be recoded using current conceptualization of HIV stigma such that personalized stigma is enacted stigma, disclosure concerns and concerns with public attitudes toward people with HIV is perceived stigma, and negative self-image is internalized stigma (Earnshaw & Chaudoir, 2009). Further analysis by Berger et al., (2001) led to the extraction of one higher-order factor.
While this provided further evidence of construct validity for the HIV Stigma Scale, if considered within the context of the recoded factors, it would indicate that enacted stigma should not be removed from the conceptualization of HIV-related stigma.
Psychometric Measurement of HIV-Related Stigma at Structural Levels
Research on the measurement of HIV-related stigma at structural and institutional levels is sparse and limited (Chan & Reidpath, 2005; Mahajan et al., 2008). Of the studies available, only descriptive information is provided on the experience of structural stigma for PLWH (Biradavolu, Blankenship, Jena, & Dhungana, 2012; Yang, Zhang, Chan, & Reidpath, 2005).
Within the larger stigma literature itself, very few researchers have considered measuring stigma across different socio-ecological levels (Gee, 2008; Hatzenbuehler et al., 2014). However, there has been growing evidence to suggest that structural levels of stigma are associated with individuals levels of stigma (Evans-Lacko, Brohan, Mojtabai, & Thornicroft, 2012; Pachankis et al., 2015).
In their study, Evans-Lacko et al., (2012) attempted to examine the relationships between structural and individual levels of mental illness stigma in 14 European countries. To do so, they combined two international datasets (the Eurobarometer survey and the Global Alliance of Advocacy Networks study) and compared public attitudes related to mental illness with individual measures of internalized stigma, empowerment, and perceived discrimination among individuals diagnosed with a mental disorder. Evans-Lacko and his colleagues (2012) found that people with mental illness in countries with more positive attitudes (lower structural stigma) reported lower rates of internalized stigma and perceived discrimination than in countries with higher levels of structural stigma. Even though both datasets were cross-sectional, limiting casual inferences from the study, the results indicate that there are associations between the measurement of structural and individual levels of stigma (Evans-Lacko et al., 2012; Major, Dovidio, & Link, 2017). In all, there needs to be more research to validate the measurement of HIV-related stigma at structural and institutional levels.
Due to the lack of experimental research on enacted and structural HIV stigma (Mahajan et al., 2008; Nyblade, 2006), relevant studies in this area may suffer from a file drawer problem. In other words, the prevalence of significant results could be inflated given that there are no incentives for publishing non-significant findings. Moreover, a majority of HIV stigma studies utilize a correlational design, and so the directionality of these associations cannot be determined. Thus, even though the understanding of HIV stigma has improved, the effect size and causality of relationships within the construct require further analysis and clarification.
Another limitation is that there is heterogeneity in the conceptualization and measurement of HIV-related stigma, which makes it difficult to compare and contrast results (Grossman & Stangl, 2013). Across HIV stigma assessments, researchers measure enacted, perceived, and internalized stigma, suggesting that these are important factors in the conceptualization of HIV-related stigma (Earnshaw & Chaudoir, 2009). However, many measures conflate different constructs with HIV-related stigma and include it in a single scale or subscale (Herek et al., 2002; Kalichman et al., 2009; Visser, Kershaw, Makin, & Forsyth, 2008). This indicates that there still might be ambiguity in terms of how HIV-related stigma is operationalized.
One final limitation is that the high internal consistency of the HIV Stigma Scale (Berger et al., 2001) could be reflective of an attenuation paradox (Clark & Watson, 1995). For example, the factors of disclosure concern and concern with public attitudes toward people with HIV might be redundant. Both factors represent and can be recoded as aspects of perceived stigma (Earnshaw & Chaudoir, 2009). While the HIV Stigma Scale might be reliable and internally consistent, the high correlations between the items on the scale might compromise construct validity of
A common conceptualization of HIV stigma is fundamental for future research, assessment, and treatment (Deacon, 2006; Grossman & Stangl, 2013; Mahajan et al., 2008). Without a unified construct of stigma, progress in the field of HIV-related stigma will continue to be impeded by a lack of standardization and incremental validity. The absence of meta-analyses within the literature provides evidence of the difficulty in parsing through the heterogeneity of the HIV stigma construct (Grossman & Stangl, 2013). Future research, then, should prioritize reaching a working consensus on the conceptualization of HIV stigma and developing an agenda that ensures consistent application of that conceptualization across studies.
From this common conceptualization of HIV-related stigma, current measures such as the HIV Stigma Scale should be refined (Berger et al., 2001). While convergent validity has been tested through correlations with related measures and constructs (Berger et al., 2001; Earnshaw & Chaudoir, 2009), more research should focus on the strengthening the discriminant validity of these measures. Specifically regarding the HIV Stigma Scale, given that several of the items load onto multiple scales of the measure (Berger et al., 2001; Rao et al., 2008), future revisions should work on improving item discrimination (Sayles et al., 2008). By refining the measures of HIV stigma in conjunction with the conceptualization of HIV stigma, the operationalization of the different HIV stigma types can be improved.
In addition, it is necessary to develop complementary measures to assess HIV-related stigma at structural and institutional levels (Chan & Reidpath, 2005; Deacon, 2006; Mahajan et al., 2008). Research efforts within the field of mental illness and stigma could be leveraged to formulate these assessments (see structural stigma section). While it is important to understand the impact of HIV stigma across a variety of social contexts, it is impractical to begin efforts into this area simply by conducting a large number of studies in different environments. Initial efforts should focus on targeting a smaller range of institutions that have presented unique challenges towards PLWH in the past such as healthcare and then build additional measurements out from there if necessary (Chan & Reidpath, 2005).
From a more practical perspective, interventions for HIV-related stigma need to address the discriminatory behaviors experienced by PLWH. Despite significant heterogeneity in the HIV stigma literature (Grossman & Stangl, 2013), enacted stigma is a factor that is seen across various measurements and operationalizations of the construct (Earnshaw & Chaudoir, 2009). In terms of treatment outcomes, reducing discrimination against PLWH could have important implications as enacted stigma is negatively correlated with indicators of physical health, including CD4 count and chronic illness comorbidity (Earnshaw, Smith, Chaudoir, Amico, & Copenhaver, 2013). Thus, future intervention research should work on addressing enacted stigma as a specific domain of HIV stigma, measuring enacted stigma consistently across studies, and testing its predictive validity for treatment, care, and prevention outcomes for PLWH (Grossman & Stangl, 2013).
Based on the current nomological net, HIV-related stigma should not be differentiated from discrimination. However, there is a need to measure HIV-related stigma in structural and institutional contexts. HIV stigma is a social process that works at the individual level, but the stigmatized person may not be the most important determinant in the development of stigma. Several researchers have theorized that stigmatization is contingent on structural inequities (Link & Phelan, 2001; Mahajan et al., 2008; Parker & Aggleton, 2003) such that interventions that only target stigma and discrimination may ameliorate the negative physical and mental health outcomes associated with stigma, but not address the entire problem and construct (Chan & Reidpath, 2005).
Ultimately, more research is required in order to measure HIV-related stigma across socio-ecological levels (Bronfenbrenner, 1977; Grossman & Stangl, 2013). Given the heterogeneity and lack of standardization within the HIV stigma literature, it is imperative that researchers in this field understand that science and test validity holds social power and influence. Measurement and psychometrics can drive change in social policy and ideology within society (Messick, 1995). While it is easy to rely on the eminence and eloquence associated with the label of science (Isaacs & Fitzgerald, 1999), researchers have an ethical commitment to follow rigorous standards of empiricism because their work can impact the lives of people. This commitment should be true for all people, but especially for groups like PLWH that continue to suffer from stigmatization.
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