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Abstract

The continuing paucity of effective interventions to reduce HIV/AIDS stigma is troubling, given that stigma has long been recognized as a significant barrier to HIV prevention, treatment, care, and support. Ineffectual HIV/AIDS stigma-reduction interventions are the product of inadequate conceptual frameworks and methodological tools. And while there is a paucity of effective interventions to reduce stigma, there is no shortage of conceptual frameworks intending to offer a comprehensive understanding of stigma, ranging from sociocognitive models at the individual level to structural models at the macrolevel. Observations highlighting inadequacies in the individualistic and structural models are offered, followed by the theory of structuration as a possible complementary conceptual base for designing HIV/AIDS stigma-reduction interventions.

Keywords

HIV/AIDS stigma intervention structuration theory

Introduction

In the initial years of the HIV epidemic, Jonathan Mann referred to stigma as becoming part of the “third epidemic,” now trailing the rapid HIV transmission and rise in AIDS cases. Mann identified stigma, discrimination, blame, and denial as extremely problematic to address, yet to address them is critical in preventing HIV.¹

AIDS is now 30 years old. Joint United Nations Programme on HIV/AIDS (UNAIDS) reported that in 2010 more than 34 million people were living with HIV/AIDS (PLHA), of which 22.5 million were from sub-Saharan Africa, which recorded 30 million deaths from the time AIDS was first identified on June 5, 1981.² Undoubtedly, over the past 3 decades, huge efforts to combat HIV/AIDS have been faithfully executed. Nevertheless, earlier in the HIV/AIDS pandemic, researchers and health practitioners were aware that HIV stigma was an important barrier to HIV prevention, treatment, care, and support. And in 2004, UNAIDS/World Health Organization (WHO) confirmed that stigma and discrimination remain a major obstacle for people to engage in HIV testing. For instance, in a survey of patients obtaining antiretroviral (ARV) drugs in Botswana, it was found that 40% deferred doing the HIV test as a result of stigma; and among injecting drug users in Indonesia, 40% indicated that they postponed HIV testing because of stigmatization.³

Researchers and health care practitioners knew from the early years of the HIV/AIDS epidemic that stigma and discrimination would become major barriers to HIV prevention and uptake of services including the role of stigma in HIV transmission. Specifically, stigma negatively impacts the following HIV preventive efforts: HIV social support behaviors, family support of PLHA, health care practitioners, risky sexual behaviors, consumption of services by the HIV-infected individuals, and serostatus testing.^4

–10

Nevertheless, in pursuit of effective prevention measures, both symptomatic and asymptomatic persons could receive an HIV diagnosis. For the asymptomatic, HIV voluntary counseling and testing (VCT) comprises pre- and posttest counseling where a person learns of his or her HIV status^11,12; wherein VCT is considered a critical first step to care and a hub for HIV prevention globally,^13
–15 a position fully endorsed by UNAIDS. Nonetheless, stigma remains a countervailing force against VCT’s role to act as a critical gateway to care and to reduce HIV transmission.

Researchers and health care practitioners knew from the early years of the HIV/AIDS epidemic that stigma and discrimination would become major barriers to HIV prevention and uptake of services. For this reason, in 1997 when the Horizons program¹⁶ started, the impact of stigma on HIV transmission was well known, and some programs focused on its effect; notwithstanding this improved awareness, there was minimum knowledge of the following: drivers of stigma, precise manner in which stigma impacts HIV outcomes, appropriate tools to measure stigma, and minimum information available as to which intervention design may reduce stigma.

Mahajan et al¹⁷ noted the availability of only a few HIV/AIDS-related stigma-reduction intervention studies and that few intervention studies were even evaluated. In fact, they noted that although stigma was a barrier to successful responses to the HIV/AIDS epidemic, action to combat stigma was relegated to a low program priority; and furthermore, the complexity of HIV/AIDS stigma and discrimination may explain the limited response. For these reasons, efforts to reduce stigma are critical to positively impact HIV/AIDS prevention,^18
–20 vis-à-vis VCT uptake as the critical first step to care. Employing interventions to neutralize HIV stigma, leading to an increased uptake in HIV services, is now vital in the global prevention battle against HIV/AIDS.^21,22

And for a long time now, qualitative studies have shown that stigma and discrimination impact people’s decisions to access VCT and treatment services.^23

–29 This finding has consistency with quantitative studies.^{30

–39}

In this commentary, I want to make some general observations on the individualistic and structural models of stigma and then suggest the theory of structuration as a possible complementary conceptual base for HIV/AIDS stigma-reduction intervention designs.

Perspectives on Stigma

Prevalence of a paucity of effective interventions to reduce HIV/AIDS stigma is troubling, given that stigma has long been recognized as a significant barrier to HIV prevention, treatment, care, and support. Ineffectual HIV/AIDS stigma-reduction interventions are the product of inadequate conceptual frameworks and methodological tools.⁴⁰ Without a sound conceptual framework and evidence-based sense of a health problem and its correlates, it may be difficult to recognize intervention outcomes. Not only are the theories and evidence useful in recognizing outcomes but also the strategies applied to effect desired changes in behavior.⁴¹ And while there is a scarcity of effective interventions to reduce stigma, there is no shortage of conceptual frameworks intending to offer a comprehensive understanding of stigma, ranging from sociocognitive models at the individual level to structural models at the macrolevel. In fact, there has been an excessive emphasis on perceptions of individuals and their consequences for microlevel interactions.⁴²

Nevertheless, the search for a useful conceptual framework has been persisting now for almost 50 years since Goffman⁴³ in a groundbreaking work defined stigma as “a dynamic process of devaluation that ‘significantly discredits’ an individual in the eyes of others.” Goffman advised that stigma be seen in “a language of relationships, not attributes,” as stigma is affixed in social interaction. Nonetheless, several population-based studies on AIDS attitudes present the attributes as being part of the individual’s character^44,45; and using the sociocognitive model with a focus on the individual shows how people construct negative categories and how they relate these categories to damaging stereotyped beliefs.^46
–48 The sociocognitive model, too, sees stigma as something in the stigmatized person and not an attribute that a person hands over to the stigmatized person.⁴⁷ This model presents stigma as a static attitude rather than as a changing social process, resulting in a failure to recognize the full impact of stigma and discrimination in HIV and AIDS.⁴⁶ This view of stigma as a static phenomenon may be due to its major focus on stereotyping rather than on structural conditions.

In addition, studies on stigma using the sociocognitive model with its unequivocally individualistic focus also eliminate consideration of the structural components of stigma and the social, economic, and political processes that create and strengthen stigma and discrimination.^42,47,49 To remedy this deficiency, Mahajan et al¹⁷ argued that Link and Phelan combined the sociocognitive/structural aspects of stigma and defined stigma as existing when the elements of labeling, stereotyping, separation, and discrimination occur together vis-à-vis the exercise of power. This combined conceptual model advances the view that interventions should have both sociocognitive and structural components, acknowledging that social, political, and economic inequalities of power are drivers of HIV stigma.

Nevertheless, the combined conceptual model does not constitute a comprehensive framework to study the outcomes of HIV stigma.⁵⁰ Recent studies showed that lack of precision in the conceptualization and measurement of HIV stigma at the individual level is an important barrier to HIV prevention, treatment, care, and support efforts; and why stigma remains a remarkable barrier in the global battle against HIV/AIDS.^51,53

Earnshaw and Chaudoir’s work⁵⁴ in attempting to fill this gap argued that the sociocognitive/structural model does not adequately explain how the individual person experiences stigma vis-à-vis health, psychological, and behavioral outcomes that energize the HIV/AIDS pandemic. Furthermore, Earnshaw and Chaudoir studied whether the individual level interventions are a fundamental component of HIV prevention activities,⁵² then understanding how HIV stigma impacts individual outcomes becomes critical, thus the justification to present a few general observations on the Earnshaw and Chaudoir framework.

Figure 1 describes the HIV stigma framework. The top part of Figure 1 shows how HIV-uninfected persons enact stigma. Prejudice, stereotypes, and discrimination are stigma mechanisms that the HIV-uninfected persons use to enact stigma to produce negative behavioral outcomes toward PLHA. The bottom part of Figure 1 shows how the HIV-infected individual develops knowledge about his or her socially devalued status through the process of enacted stigma, anticipated stigma, and internalized stigma, perpetrated by the HIV-uninfected patient.

Figure 1.

The HIV stigma framework (Earnshaw and Chaudoir⁵⁰).

Conclusion

Although Earnshaw and Chaudoir chastised the combined sociocognitive/structural model for failing to explain how the individual experiences stigma, their framework is unable to present the individual’s resistant and active responses to stigma. Nonetheless, Earnshaw and Chaudoir’s framework provides focus on the HIV-infected patient’s passive responses. Earnshaw and Chaudoir indicated that the HIV-uninfected individuals enact prejudice, stereotypes, and discrimination as outcomes of stigma toward PLHA, and the outcomes of these enactments include social distancing and policy support. Nevertheless, there is no conceptual understanding on whether PLHA would respond to this stigma enactment. There is no shortage of studies to explain the consequences of stigma for PLHA,^53

–57 with few studies focusing on the resistant and active capacity of PLHA. People living with HIV/AIDS and their families have the capacity to produce active responses, notwithstanding their stigmatized status. For instance, Poindexter⁵⁸ in a narrative analysis described the family’s experiences of stigma as they provided care for their HIV-infected daughter and how the medical system subsequently failed the daughter. And again, Poindexter⁵⁹ reported on her personal fight against stigma to care for her adult HIV-infected son who later succumbed to AIDS.

In fact, many individualistic studies focus on attitudes of the HIV-uninfected individuals toward PLHA, and even where the unit of investigation is stigmatized, methodological tools generally extract passive responses from the stigmatized. Indeed, the Earnshaw and Chaudoir’s HIV/AIDS stigma framework has no theory of action in the Giddensian sense⁶⁰; that is, in a theory of action, there is a conception that people (in this case, PLHA) reflexively monitor their behaviors vis-à-vis their knowledge and where they are in some measure conscious of conditions governing those behaviors. Earnshaw and Chaudoir’s framework, indeed, shows that the HIV-infected individual develops knowledge about his or her socially devalued status vis-à-vis enacted stigma, anticipated stigma, and internalized stigma; yet the framework without the Giddensian theory of action fails to show how PLHA’s knowledge produces and reproduces resistance to their experience of stigma. Apparently, in the Earnshaw and Chaudoir’s sense, PLHA are not capable and knowledgeable about the culture of stigma that they experience, when the reverse situation may very well be true.

In fact, in a general sense, both individualistic and structural models of stigma downplay the knowledge and capability of PLHA, a line of thinking quite consistent with Talcott Parsons’ structure of social action where “the stage is set, the scripts written, the roles established, but the performers are curiously absent from the scene.”⁶¹ Existing conceptual frameworks have presented the stigmatized and the disadvantaged as passive and unable to resist their affixed stigma and transform their situations. Lest we forget, Black American history is replete with examples of how a stigmatized, disadvantaged, and exploited group took on the might of White slave owners, long before there were civil rights laws. And this happened because notwithstanding brutal constraints, Blacks created choices and made a difference to their situation.

And previous models of stigma are bereft of a theory of action. For instance, stigma is perceived as a one-way materialization created by structural conditions and imposed on PLHA as passive recipients who have no control over such circumstances.^62,63 The point of Giddens’ theory of action is that actors are knowledgeable about their culture and capable to act and resist; this understanding of action theory, therefore, makes PLHA agents who are part of a human agency. In fact, PLHA are not cultural dopes. People living with HIV/AIDS do make active responses to their stigmatization supported by the resistance to HIV/AIDS stigma that is gaining momentum globally and evidenced by the following: the “Give Stigma the Index Finger” project in Swaziland, Ethiopia, and Mozambique; AIDS Discrimination in Asia project administered by PLHA to develop capacity to resist stigma; Global Network of People Living with HIV (GNP+) enables PLHA to become empowered to affirm their rights; HIV-infected Magid’s activists work in Egypt through the forum to Fight Stigma and Discrimination Against People Living with HIV/AIDS, Volunteer Positive, among others. In addition, the availability of ARV drugs to prolong the life of PLHA has provided them with some maneuverability to actively and positively respond to their experience of stigma, and where they do not allow the stigma to predominantly impact their lives.

The Giddensian perspective considers PLHA as active and knowledgeable about their culture, and becoming empowered provides the wherewithal to positively resist their stigma. I want to explain this perspective on the stigma affixed to PLHA through the lens of Giddens’ theory of structuration, an attempt to integrate agency and structure. The theory starts off with addressing the absence of a theory of action in the social sciences and the accompanying deficiencies of structural functionalism and orthodox Marxism, thus

But those traditions of thought which have concentrated upon such problems, particularly functionalism and orthodox Marxism, have done so from the point of view of social determinism. In their eagerness to ‘get behind the backs’ of the social actors whose conduct they seek to understand, these schools of thought largely ignore just those phenomena that action philosophy makes central to human conduct . . . The philosophy of action suffered from two sources of limitation . . . an adequate account of human agency must, first, be connected to a theory of the acting subject; and second, must situate action in time and space as a continuous flow of conduct, rather than treating purposes, reasons, etc., as somehow aggregated together.⁶⁴

Giddens argued that functionalism (voluntaristic theory) and orthodox Marxism (deterministic theory), in not presenting action as a constant flow through time and space, have produced the dualisms of individual/society, subject/object, and conscious/unconscious forms of cognition; these dualisms have incapacitated the development of a theory of action. For these reasons, Giddens, in his theory of structuration, replaces these dualisms with a singular duality of structure that refers to the critical recursiveness of social life. Giddens’ theorem that people are knowledgeable about the social systems which they establish and reproduce in their actions is strategic to the duality of structure. Giddens sees structure as dual, meaning that structures are “both the medium and the outcome of the practices which constitute social systems.”⁶⁵ That is, structure produces action and action produces structure. Apparently, structures shape people’s actions, and people’s actions, in turn, produce and reproduce structures, prompting Sewell⁶⁶ to say that “In this view of things, human agency and structure, far from being opposed, in fact presuppose each other.”

There are some significant elements of structuration theory as presented by Ritzer⁶⁴: (1) agents (PLHA) reflexively monitor their action including their social and physical contexts; (2) agents pursue a sense of security vis-à-vis rationalization which enables them to cultivate routines; (3) use of practical consciousness provides a spotlight on what agents do; agents initiate events in their agency to make things happen; (4) the concept of unintended consequences delineates the movement from agency to a social system; (5) agents possess power and action, in order to transform the situation; (6) structure refers to rules and practices which have the potential to be both constraining and enabling; and structure is present only through the action of agents; (7) social systems are reproduced social practices between agents, generally the product of unanticipated consequences of their action; (8) time and space are critical in structuration theory, as they rely on the presence of people temporally and spatially.

With these building blocks of structuration theory (1-8), I now present Giddens’ duality of structure as a critical element of the theory.

Bryant and Jary⁶⁷ explain the structuration theory through reference to the three rows on the duality of structure in Table 1.⁶⁸ In the first row, social interaction across time and space entails the communication of meaning, the exercise of power, and the evaluative judgement of conduct; in the second row, interpretative schemes are the typical symbols and codes included in the agent’s stock of knowledge to sustain communication; facility is the medium through which the agent exercises command over people, resources, and practices; and norms comprise the agent’s expectations; this second row with the modalities shows ways in which the agent accesses rules and resources and engages in practices to generate interaction; and in the third row, significant structure entails semantic rules, dominant structure produces unequal distribution of resources; and legitimate structure involves moral or evaluative rules.

Table 1.

The Duality of Structure^a

Interaction	Communication	Power	Morality
(Modality)	Interpretative Scheme	Facility	Norm
Structure	Signification (Weltanschauung)	Domination	Legitimation

^aReprinted with permission from Giddens.⁶⁸

Nevertheless, structure referring to rules, resources, and practices restrain and empower action and are themselves replicated through that action,⁶⁹ constituting a modification of Giddens’ definition of structure, by showing the affinity between agency and structure. Stones⁷⁰ also reworked Giddens’ structuration theory, introducing the concept of the agent’s context analysis, where the focus is on the strategic context of the agent’s action vis-à-vis connection of interdependencies, rights and obligations, power asymmetries, and the conditions and costs of the agent’s action. In fact, agents’ actions will vary in accordance with their contexts. For this reason, varying contexts will limit or enable the agent’s knowledge and capability to act.

And the HIV/AIDS pandemic presents a phenomenally new transitional context for the HIV-infected individuals. Giddens⁷¹ would probably refer to the transition from a healthy status to the contraction of HIV as a “critical situation,” where familiar and comfortable routines of living for many years instantly now become inapplicable and irrelevant to navigating life with HIV/AIDS stigma. Several studies^{63,68,72

–76} on HIV/AIDS stigma refer to Giddens’ structuration theory to explain this critical situation.

Furthermore, to propose structuration theory as a conceptual framework for HIV/AIDS stigma would necessitate showing how the theory is useful in designing practical interventions to reduce stigma. There are several studies on stigma and discrimination that use structuration theory, which depict the stigmatized individual as knowlegable and capable of reflexively monitoring his or her own action and, at the same time, portray the relationship between agency and structure. The HIV-positive person’s family relations were reconstructed in Turkey through Giddens’ concept of signification in structuration theory, whereby the HIV infection now has new meanings, as the infection is being seen as no longer deadly to the infection being manageable.⁷⁷ Doctors provided the new signification or new semantic codes, “Those semantic codes are: preferring the term HIV positive instead of AIDS and defining it as a chronic illness. These semantic codes pave the way for production of new meanings. Thus, the infection sheds its label ‘being deadly’ and it is transformed to an illness manageable by drugs. Thus, the semantic shift takes HIV from incurable to curable.”⁷⁸ These new semantic codes indicating that the HIV infection is less deadly will enhance relationship formation, particularly within the family, the mainstay of care and support for the HIV-infected patients in many parts of the world. These authors also asserted that reconstruction of these meanings is probably a major step to deconstruct the current stigmas that perpetually have been constructing such horrifying metaphors of death, shame, guilt, and so on.

In applying this Giddensian theory of structuration in another study, Harter et al⁷⁹ studied homeless youth in a midwestern community in the United States, where stigma frequently pushes homeless youth underground, thereby adding to their invisibility and stigmatization. Even though their work is among homeless youth, their analysis is applicable to HIV/AIDS stigma as outlined in their analysis in these areas: structuration theory shows how those with power employ “stigmatized” values, identities, and discourse through interactions between PLHA and the nonstigmatized person; calls for dismantling the domination of these values, identities, and discourse; and interactions between health professionals and the stigmatized person can weaken or strengthen these dominating patterns of behavior-sustaining stigma. Undermining these dominating behaviors can happen vis-à-vis, establishing and sustaining national and international collectives that would equate with Giddens’ concept of new facility to reduce the unequal distribution of resources between the stigmatized and the nonstigmatized, and at the same time, for the stigmatized to strive toward a competitive position against stigmatizers. For example, as aforementioned, review how PLHA stand firm globally against stigma: the Give Stigma the Index Finger project in Swaziland, Ethiopia, and Mozambique; AIDS Discrimination in Asia project by PLHA; Global Network of People Living with HIV (GNP+) to assert their rights; HIV-infected Magid’s activist efforts in Egypt through the Forum to Fight Stigma and Discrimination against People Living with HIV/AIDS, Volunteer Positive, among others. Another form of Giddens’ concept of a new facility to improve PLHA’s control of resources and to shed stigma is the accessibility of ARVs that now enables PLHA to live longer and to live a normal life.

Cunningham et al⁸⁰ reviewed the activities of churches in Baltimore, Maryland, pertaining to sexuality issues, and whether they can possibly stigmatize a person with or at risk for HIV/AIDS, and whether the individual agency or institutional behavior influences churches on these matters. To a large extent, the churches’ activities on sexuality issues were reconstructed through Giddens’ concept of legitimation in structuration theory, whereby the church leaders (agency) themselves adopted new normative frameworks and activities to address HIV infection. These new norms included the distribution of condoms by one pastor to the congregation that was sexually active; and church leaders’ reconciliation of the official teachings on sex and sexuality with HIV prevention work. These researchers pulled from structuration theory the notion that church leader/pastor (agency) and structure (church) are a duality, whereby the church is a moving force with the pastor, and at the same time, the church experiences a vacuum without the pastor. Church leaders’ engagement in actions on sex and sexuality issues was influenced by the church of which they are a constituency; nevertheless, it is through the church leaders’ actions that the church is transformed or preserved.

This commentary concentrates on the stigmatizer’s action that enacts stigma on the one hand, and the stigmatized whose action resists stigma, on the other hand. The modalities (second row in Figure 1) which are the interpretive scheme, facility, and norm transform structure into action and action into structure and explain people’s behaviors in enabling and constraining contexts. And if we accept Goffman’s position that stigma is acquired through social interaction, then in interpreting Giddens’ work, I would propose that enactment of HIV/AIDS stigma occurs when the modalities convert the structure into action and action into structure. Furthermore, given the theoretical view that modalities provide the means in which structures become transformed into action and action into structure, and that stigma happens during interactions, then HIV/AIDS stigma-reduction intervention designs could target these modalities.

The Giddensian model accommodates both the person who enacts the stigma and the recipient of stigma (where both are agents with power), in that both can reflexively monitor the flow of stigma vis-à-vis their own action, one intending to enact stigma and the other intent on reducing the surge of stigma.

Footnotes

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) received no financial support for the research, authorship, and/or publication of this article.

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