Social representations of HIV/AIDS in mass media: Some important lessons for caregivers

Introduction

The present literature review discusses research into social representations of HIV/AIDS published since 1986. The aim of the review is to provide a historical outline of social representations of HIV/AIDS, beginning with the mass outbreak of the disease during the 1980s, through the decade of the 1990s, and to the present day. The works and authors cited reflect a range of representations of HIV/AIDS across various world regions (e.g. Latin America, North America, Africa, Europe, Oceania, Asia). A number of studies have argued persuasively for the importance of social representation theory in the overall body of research on HIV/AIDS, including works on such themes as social representations of health and illness (Jodelet, 1989), media representations (Nengeh, 2003; Scalvini, 2010), and various affected populations (Albert, 1986; Brasileiro and Freitas, 2006; Joffe, 1994, 1995, 1996a, 1996b; Labra, 2011; Páez et al., 1991; Weeks, 1989).

It is of primary importance to understand the development of social representations over time, since they have had, and continue to have, a determinant influence on the quality of care that HIV/AIDS patients receive today. The review of literature presented in this article will argue for the necessity of developing cultural competencies among social workers who deliver care to people infected with HIV/AIDS. Published research into social representations of HIV/AIDS will be examined in chronological order of publication, within three major periods that have marked the development of social representations, largely corresponding to the three decades of the 1980s, 1990s and 2000s. During that time, representations of the pandemic have undergone many variations and changes. Beginning as perceptions of a stigmatized infection, following the first diagnosis of the disease (Herek and Glunt, 1988), social representations of HIV/AIDS have become those of a fundamentally social problem (Labra, 2010).

Methods

The bulk of the documentary research underpinning the present review was carried out in digital databases, including Sociological Abstracts, Social Work Abstracts, Current Contents, Medline, Cinahl and Scielo. I will discuss the research presented in some 40 publications – the earliest published in 1986, the most recent in January 2011 – in order to examine their individual and collective contributions to our understanding of social representations of HIV/AIDS. Among the retrieved articles, the present study retained only those that directly examined the theme of social representations of HIV/AIDS.

The scope of this study was limited by time constraints and restrained access to resources, which tilted the focus towards scholarly journals and away from book-length studies. It is possible that this research strategy resulted in the omission of relevant book chapters in edited volumes. Additionally, the relative paucity of published research on the subject available through the major digital databases imposed limitations on the development of a potential analysis of representations of HIV/AIDS from the perspective of cultural differences. The inclusion of publications in English, French and Spanish widened the scope of the study to include a broader variety of perspectives. Nevertheless, the bibliography neither claims to be an exhaustive catalog of all publications on the subject nor, ultimately, is it necessarily representative of the complete body of literature on social representations. The nature of research in electronic databases meant also that potentially relevant information contained in documents that did not match the key words used was omitted, as were, possibly, other existing documents not indexed in the databases consulted. Given the limitations, it is important to add that the present study does not attempt to generalize its findings to populations, jurisdictions or geographic regions not covered by the reviewed literature. Its main contribution is to trace the historical development of social representations of HIV/AIDS and identify their continuing influence on the care delivered to those carrying the disease today.

In terms of approaches noted throughout the literature, the overwhelming majority of the examined publications rely on qualitative analysis methods. Most provide a portrait of social representations since the beginning of the pandemic without attempting to draw comparisons between specific persons or groups affected by HIV/AIDS. Indeed, throughout the examined literature, results and conclusions do not tend towards comparative considerations of individuals or specific groups affected by HIV/AIDS. Rather, based on the available research, they describe social representations as they have emerged since the beginning of the pandemic.

Cultural competence

An overview of social representations shows that HIV/AIDS has principally affected social and racial/ethnic groups that had previously suffered from discrimination and socioeconomic disparities. As they interact with health care providers, negative representations of these populations can significantly affect patient–provider relationships. Consequently, cultural competence among health care professionals is of the utmost importance.

First, it is important to stress that the cultural competence evolves within broader cultural concepts and realities. The definition of culture I will adopt for the purposes of this study is that of a ‘complex and interdependent structure of models regulating behavior, knowledge, representations, codes, formal and informal rules, interests, values, aspirations, beliefs and myths’ (Gratton, 2009: 33). For many authors, cultural competence is intimately connected with an awareness of cultural differences. To talk of cultural competence is to talk of the ability to avoid stereotyping members of a group while still appreciating the importance of culture. The National Association Social of Workers, based in Washington, DC, defines cultural competence as ‘a set of congruent behaviors, attitudes, and policies that come together in a system or agency or among professionals and enable the system, agency, or professionals to work effectively in cross-cultural situations’ (NASW, 2000: 61). Giger et al. (2007), on the other hand, argue that cultural competence is an ongoing process that involves accepting and respecting differences, while not allowing one’s personal beliefs to have an undue influence on those whose worldview is different from one’s own. Thus, cultural competence requires that AIDS health care providers (including social workers) display a certain level of cultural awareness and sensitivity.

One of the purposes of the present article is to draw attention to the history of social representations of HIV/AIDS in order to insist on the urgency of improving health and social workers’ intervention practices, with a focus on cultural competence relevant to working with people living with HIV/AIDS.

Therefore, before moving further, it is crucial to define clearly the concept of social representation. The definition used throughout this study was elaborated by Serge Moscovici (1961), founder of social representation theory. Moscovici described social representation as:

a system of values, ideas and practices with a twofold function, first to establish an order which will enable individuals to orient themselves in their material and social world and to master it; and second to enable communication to take place among the members of a community by providing them with a code for social exchange and a code for naming and classifying unambiguously the various aspects of their world and their individual and group history. (Moscovici, in Herzlich, 1972: 11)

In short, thus, for Moscovici (1961), social representations exert great influence on individuals’ understanding of the world around them.

The 1980s

Since the emergence of HIV/AIDS in the early 1980s, numerous studies have examined the social representations of people infected with the virus, as well as the dissemination of those representations by mass media in the Western world (see, for example, Albert, 1986; Echebarría and R. Páez, 1989; Watney, 1989). In the history of research on social representations of HIV/AIDS, the work of Weeks (1989) marks a major landmark. Weeks argued that HIV/AIDS had come to be seen as the defining disease of the 1980s and, in the consciousness of the general public, was the 20th century’s answer to the plague. And one of the most important factors driving the development of representations during the 1980s was a generalized perception of HIV/AIDS as being closely linked with marginalized populations (Gilman, 1987; Weeks, 1989).

Weeks (1989) referred to three stages, which he saw as fundamental in the shaping of social representations during the period. The first stage was that of the illness as a ‘dawning crisis’ (1981–1982) and it was at this early stage that perceived links with the 4Hs (heroin addicts, homosexuals, Haitians and hemophiliacs) first took shape. During this period, mass media often reported on the disease under such headlines as ‘Mysterious new ill infects homosexual men and drug addicts’ or ‘The gay plague’ (Markova and Wilkie, 1987) and using such terms as ‘Gay-Related Immune Disease’ and its acronym GRID (Nengeh, 2003).

The second stage in the development of representations during the 1980s was that of ‘moral panic’. The apparent marginality of those infected with AIDS and the disease’s identification as a ‘gay plague’ were major influences in the period 1982–1985, which was especially characterized by a rapid escalation of fear in media reports, as well as palpable public hysteria. In some sources, HIV/AIDS was portrayed as a consequence of acts bringing about ‘the judgment of God’ upon an immoral world (Hussein and Miah, 1998; Silverman, 1989; Taylor-Brown and Garcia, 1995). In many instances during this period, as noted by Joffe (1996a, 1996b), AIDS was seen as inextricably linked with death, stigma, immoral conduct and deserved punishment. Ultimately, however, this context elicited strong reactions from the most affected groups, particularly the gay and lesbian communities, and gave rise to widespread calls for the humanization of care.

The third stage identified by Weeks (1989) was that of ‘crisis management’ (1985–1989). The onset of this stage was, in part, the result of factors such as the widely publicized illness and death of actor Rock Hudson, which added a new, dramatic dimension to representations of HIV/AIDS in the mass media. This period saw a deepening of the health crisis, as HIV infection and the various dimensions of AIDS, as well as its costs to society, became more widely understood.

Social representations of HIV/AIDS during the 1980s tended to portray the disease as being endemic to the 4Hs and, according to Moatti et al. (1988), to construct heterosexual practices as secure from risk by virtue of being ‘the norm’. This line of development of social representations reflects a tendency reported by Echebarría and Páez (1989), whose study participants exhibited a tendency to prefer information that was congruent with pre-existing representations and to distort newly memorized information to conform with previously held representations. In the case of HIV/AIDS, in the 1980s, moralizing representations associating the disease with ‘the sinful world of sexuality’ emerged early on and took root quickly (Velimirovic, 1987; Watney, 1989; Weeks, 1989). These moralizing representations, as Patton (1994) argued early on, understood the disease within a ‘queer paradigm’ in which HIV/AIDS became a mark of marginality and sexual perversion. In addition, in the United States and elsewhere, religious convictions played an important role in driving the development of social representations of HIV/AIDS towards those of a disease linked with sexual ‘perversion’.

Social representations observed in Europe sometimes attributed strong negative significance to women, going so far as to identify them as responsible for the disease. Women were consequently demonized through the negative significance attached to their sexuality (Gilman, 1987) and were represented as diseased and contagious. In this respect, a parallel can be drawn with representations of HIV/AIDS on the African continent (Brijnath, 2007: 384), where, for many groups, representational dynamics hinge on elements such as contagion, weightloss, poisoning (‘slow poison’, ‘nighttime poison’), witchcraft (‘evil spells’), the ‘evil eye’ and death. These types of representations provide incitement to categorize the sick as different and separate, thereby at once facilitating and justifying discriminatory behavior.

Representations similar to those popularized during the moral panic described by Weeks (1989) were also present in Asia, particularly in Thailand, where three types of negative representation were projected onto AIDS. The first described the disease as the ‘result of moral laxity’ and was propagated through representations filtering into public opinion that portrayed infected homosexual men as transmitting the virus to intravenous drug users and sex workers. The second, that of ‘the HIV-positive as the dangerous other’, implied that the pandemic was an infectious disease transmitted through the blood of an infected person. The third was based on beliefs that the infection was ‘the problem of individuals and risk groups that deviate from the social norm’ (UNESCO, 1999: 8).

In a study of reactions to AIDS in Europe, Páez et al. (1991) identified two distinct and largely opposite belief structures, each based in different social and ideological convictions. One saw AIDS both as a disease and as a moral and social crisis, reflecting the adherance of certain sectors of society to a conservative and reproving ideology. By contrast, the second belief structure, which may be identified with relatively liberal sectors of society, did not seek the origins of the disease either in moral causes or among marginalized groups. The emerging representations, thus, were strongly rooted in the pre-existing social contexts in which they took shape.

The 1990s

Social representations of HIV/AIDS that had emerged during the 1980s and the set of groups most affected by the resulting stigma changed little over the course of the 1990s. But an increasing number of researchers began publishing studies examining the negative representations of people infected by HIV as marginal and deviant (Mannetti and Pierro, 1994; Sacks, 1996). Within certain affected groups (gay community, sex workers, intravenous drug users), negative representations of HIV/AIDS were internalized and, subsequently, led to strained interactions with HIV-positive individuals within those groups.

In the middle years of the 1990s, three archetypal representations of people afflicted with HIV/AIDS were predominant. The most common archetype in the Western world was that of ‘guilty’ homosexual men who were deserving of the condition, which represented punishment (be it even unto death) for their deviant sexual practices. The antithesis of this archetype was the image, most frequently attached to white, married, middle-class men, of ‘innocent’ people who happened to have contracted HIV/AIDS. Heterosexual women infected with the virus were, for their part, frequently described during this period as having been infected by male sexual partners who had not disclosed their own infection (Lupton, 1994; Sacks, 1996). In this context of representation, those seen as most ‘innocent’ were children, who were considered exempt from reproach, shame, or guilt for their serological status. This representation was prominent in the case of hemophiliac children infected with HIV through blood products (Kitzinger, 1993; Lupton, 1994). The distinction between those ‘guilty’ and those ‘innocent’ of being HIV-positive has been maintained, to some extent, by public health discourse on AIDS in later years, some of which has placed heavy stress on ‘lifestyle choices’. Mannetti and Pierro (1994) pointed to mass media as having precipitated the construction of HIV/AIDS as a social problem by fueling hysterical reactions among the general public.

As stated earlier, the homosexual population became the first target to be saddled with responsibility for HIV/AIDS during the 1980s. Sacks (1996), however, also identified a persistent tendency in public health discourse in the United States to attribute a part of responsibility for transmission to infected sex workers. This discourse reproduced and perpetuated representations of deviance, which were closely linked to notions of women as a ‘polluting’ force. Another theme, that of self-control and physical self-discipline, was particularly potent in the American context and emerged as an implicit component of representations of sex workers, and HIV-positive mothers in particular. According to this representation, HIV/AIDS could be avoided through ‘discipline’ and those who had become infected had only themselves to blame.

Analyses of the social representations disseminated by various media in Australia, on the other hand, pointed to three major archetypes built around a dominance relationship between HIV/AIDS and those infected: the AIDS victim, the AIDS survivor and the AIDS carrier (Lupton, 1999). The victim archetype had negative significance for many people infected with the virus in the mid-1990s. The predominating representations were of HIV/AIDS patients as ravaged, disfigured and debilitated by the syndrome, as well as alone, desperate and condemned to ‘inevitable’ death (Crimp, 1992b: 118, in Lupton, 1999). The archetype of the AIDS survivor portrayed people fighting against despair and sickness, as epitomized by portrayals of Earvin ‘Magic’ Johnson, the HIV-positive American basketball superstar (Lupton, 1999). A third, alternative archetype, discernible in media portrayals during the 1990s, was that of the HIV/AIDS carrier. With the development of antiretroviral drugs in early 1994, it became possible to live with HIV increasingly longer before developing full-blown AIDS. People infected with HIV were encouraged to live ‘by distancing themselves’ from the virus, which now began to be portrayed as having been tamed by medicine.

The 2000s

Recent research shows that the first decade of the 21st century, in comparison with the two preceding decades, has been a time of evolution in social representations of HIV/AIDS. As discussed by Joffe and Bettega (2003), HIV/AIDS was a focal point of social representation research during the 1980s and 1990s, when the virus and its effects were a new phenomenon (see Echebarría and Páez, 1989; Joffe, 1995, 1996a, 1996b; Markova and Wilkie, 1987; Páez et al., 1991; Sacks, 1996). The development of knowledge during that period led to the identification of a range of social representations of HIV/AIDS, in particular those informed by the conservative and religious attitudes that initially dominated reactions to the human immunodeficiency virus.

During the 2000s, a number of researchers further developed the study of representations of HIV/AIDS and pinpointed some of their most salient elements. Before discussing these, however, let us recall that during the two preceding decades information on the pandemic was generally scarce, while its social representations were overwhelmingly negative and attached to marginalized groups. Moreover, the deadly consequences of HIV/AIDS for those infected gave rise to perceptions of the disease as a death sentence. In many cases, mass media portrayed the virus as a plague, an impurity, a polluting element and a contaminant. The construction of HIV/AIDS as a symbol of fear, in large part fueled by media representations, has had a direct impact on health care practices (Labra, 2011; Labra and Bustinza, 2009). The rapid development of fear towards HIV/AIDS drove caregivers to adopt extreme measures in efforts to avoid physical contact or even proximity with infected individuals (Chapman, 2002).

In sub-Saharan Africa, mass media representations remain based on perpetuated colonialist views, in which Africa is a sick and feminized ‘dark continent’ (Brijnath, 2007; Watts and Boal, 1995, in Bleiker, 2007). Thus, social representations of HIV/AIDS in Africa correspond to a representational model that has its origins elsewhere. Research has shown that beliefs prevalent in Africa about the causes of conventional diseases are also reflected in social representations of HIV/AIDS. To cite just one example, traditional views of disease have led Zambia’s Tonga rural ethnic group to ascribe the spread of the pandemic to imported Western sexual practices (Mogensen, 1995, in Joffe and Bettega, 2003). Tonga beliefs associate HIV/AIDS with kahungo, an illness traditionally believed to spread through contact (not necessarily sexual) with women who have miscarried. Thus, earlier mistaken beliefs about the spread of disease have been transposed onto representations of HIV/AIDS, which then become an extension of pre-existing concepts of disease as a punishment (Joffe and Bettega, 2003).

In the case of Asia, a study carried out by Ming (2007) shows that the discourse on HIV/AIDS prevailing in Hong Kong is closely linked to the historical trajectory of other culturally grounded discourses of danger, deviance, and desire. Perceptions of HIV/AIDS as being deadly constitute another salient element identified in studies of representations during the 2000s (Goodwin et al., 2004; Schoeneman et al., 2010) and similar observations have been made in a study by Brasileiro and Freitas (2006) as well as, more recently, by the present author (Labra, 2011). However, a study by Da Silva and Takahashi (2008), carried out in Brazil, has shown that people infected with HIV/AIDS assign meanings to the virus that do not evoke images of death. Their more positive relationship with the disease, according to the study, encourages sufferers to take better care of themselves and allows them to maintain their anonymity as AIDS carriers.

In Eastern and Central Europe, social representations of groups at risk of infection exhibit both remarkable similarities and intriguing differences throughout the region (Goodwin et al., 2003). Studies have identified a number of negative associations related to the HIV/AIDS epidemic, echoing the findings of studies carried out elsewhere. One survey showed that media representations of the disease varied widely across the region and that prevalent conservative religious opinion had been a factor in the spread of prejudices about the disease and people living with HIV/AIDS. However, a study by Campbell and Gibbs (2008) also showed that media representations in the region reflect a narrow definition of HIV/AIDS as a primarily medical problem.

In Brazil, on the other hand, social representations have tended to establish links and draw comparisons between AIDS and other diseases, such as cancer. There is evidence to suggest that sufferers may use such comparisons to relativize HIV/AIDS in reaction to fears of being discovered and one’s sexual orientation being revealed (Brasileiro and Freitas, 2006). It appears that, although previous portrayals of HIV/AIDS as a ‘gay cancer’ are no longer current, sexual prejudice continues to play a role in the Brazilian context, as indeed it does elsewhere, too, as is evident from the substantial literature on the subject (see for example, Andrinopoulos et al., 2011; Mizuno et al., 2011). In a similar vein, a recent study by Riley and Baah-Odoom (2010) has identified social representations that link HIV/AIDS to frequent sexual relations. One likely reaction to the moral stigma associated with sexually transmitted diseases is to dissimulate the causes of disease and ill health, and this is indeed a well-documented facet of the development of representations of incurable illnesses (Markova and Wilkie, 1987).

Discussion

A review of the history of social representations of HIV/AIDS shows that the pandemic became associated with an already marginalized homosexual population in nearly all affected regions; a second pattern, common in places where large numbers of women had contracted the disease, associated HIV/AIDS with female sex workers. Interpretations of the modes of infection framed in terms of morality were assimilated and then disseminated by Western print media and became the prevalent social representations of people infected by HIV/AIDS. Social representations were at first broadly attached to marginalized populations in general and only later became more distinctly identified with the 4Hs (heroin addicts, homosexuals, Haitians and hemophiliacs). In terms of research into social representations of HIV/AIDS, studies following this period focused increasingly on populations that had been neglected during the first decade of the disease’s spread (Juhasz, 1995).

In tracing the development of social representations of HIV/AIDS since the 1980s in various world regions, it becomes apparent that Africa represents a distinct context. There, representations took on a specific form in which the disease was frequently not perceived as a syndrome acquired through infection. Rather, among some African communities, the disease was given magical representations, such as poisoning (‘slow poison’, ‘nighttime poison’), witchcraft (‘sorcery’), kahungo or ‘evil eye’. In fact, in stark contrast to the situation commonly found in Europe, North America, Latin America and Asia, the present review did not identify any studies of African representations linking the disease to marginalized groups.

Elsewhere, the 1990s marked a generalized change in representations of high-risk groups. When HIV/AIDS was first identified, male homosexuals and intravenous drug users were seen as the main targets of infection. But, during the 1990s, groups such as prostitutes, bisexuals and heterosexuals also became identified with high risk of infection (Kitzinger, 1993; Lupton, 1994). In the case of the female population, despite the growing numbers of women infected with HIV/AIDS, the majority of the literature on social representations tends to gloss over their condition. In general, however, research and public opinion have undergone considerable change: ‘Western public opinion no longer accepts the notion that HIV/AIDS is an infection limited to the deviant and anonymous; it must now be approached as potentially affecting the whole population’ (Nengeh, 2003: 81). This view reflects a new element in the public understanding of the pandemic, since, as we saw in the case of developments during the 1980s and 1990s, social representations mirror the changes of their constituent peripheral elements.

During the 2000s, a new archetype of those infected with HIV/AIDS began to assert itself throughout the literature: that of people living with HIV/AIDS, also known by the acronym PLHIV/AIDS (Lance et al., 2007; Reynolds et al., 2009). This representation arguably reflects a more humane vision of the life conditions of HIV-positive individuals and suggests an empathetic approach towards the suffering of those whose infection carries the stigma of social exclusion (Formozo and de Oliveira, 2010). The image is no longer one of carriers or victims or even survivors: the present archetype carries the public message that it is possible to live as a person with HIV. This new outlook has come as a result of medical advances, already underway during the 1990s, which have transformed the HIV/AIDS health care landscape. Previously, an HIV-positive diagnosis was considered by many to be effectively a death sentence. Now, however, HIV/AIDS is more likely to be seen as a chronic disease (Roberts, 2002). This change in the representation of HIV/AIDS from ‘deadly’ to ‘chronic’ has not been universal, however. For those infected, HIV/AIDS is still frequently synonymous with ‘deadly disease’ (see Brasileiro and Freitas, 2006; Labra, 2011).

Despite changes at the level of the peripheral elements of representation of HIV-infected populations, prejudices, stereotypes and stigma remain present. It is therefore essential to acknowledge that the irruption of AIDS into individuals’ lives cannot be disconnected from local conceptions of the individual, culture, strength and vulnerability. It is therefore important that the care delivered to an infected population take into account the totality of that population’s needs. In order to accomplish this, it will be necessary to elaborate new conceptions and discover new methods of responding to those needs. Since negative social representations of various populations still affect the delivery of care, an essential element in the process will be to assist caregivers (including social workers) in understanding both the social significance associated with the illness and the concept of cultural competence.

Medical advances during the 1990s transformed the landscape of health care approaches to HIV/AIDS. In the eye of the public, an HIV-positive diagnosis was once widely considered a death sentence. And although today HIV/AIDS is increasingly seen as a chronic disease (Roberts, 2002), current trends in the spread of the disease and its social representations highlight the need for better preparation of health workers in terms of cultural knowledge, so that they are able to respond effectively to the needs of PLHIV/AIDS. Cultural competence must be developed within an approach that takes into account the worldviews of both health professionals and sick individuals, in order to produce intervention strategies that are better adapted and more responsive to the needs of the infected individuals to whom care is addressed.

The analyzed studies show that discriminatory attitudes towards sexual activity, sexually transmitted diseases, homosexuality and hard drug use all affect access to care for PLHIV/AIDS. Caregivers do not always demonstrate attentive or considerate attitudes towards the infected, largely because of prejudices and plainly erroneous beliefs about the pandemic. Developing intercultural competence places many challenges before social workers, including those linked with attitudes of openness, acknowledgement and understanding towards a clientele saddled with negative representations built up over long periods of time.

Conclusion

The aim of this literature review was to provide an overview of social representations of HIV/AIDS since its mass outbreak during the 1980s, through the decade of the 1990s, and to the present day. The review shows that, within specific national contexts, changes have begun to take place in the attitudes of HIV/AIDS care personnel towards infected individuals. The majority of studies concerned with infected populations, across a range of cultures, demonstrate the presence of negative representations within the health field. Stigma and prejudice remain present in the lives of people infected with HIV/AIDS and it is care personnel (including social workers) who must counteract the deleterious consequences. In order to be able to improve the efficiency of their work, we must continue to improve our understanding of social and cultural factors and, thus, more accurately view the experience of infected individuals within specific contexts.

PLHIV/AIDS feel a deep need to be heard. The socio-epidemiological history of the disease they carry is unique. It is therefore necessary to assist health care professionals and social workers in understanding the social significance attached to the disease and to explore the concept of cultural competence within the scope of interventions addressed to PLHIV/AIDS – a highly vulnerable population whose self-esteem has long suffered because of the representations projected onto the disease. This review of the literature has provided an account of the historical development of social representations of HIV/AIDS and their continuing influence on the care delivered to those carrying the disease today.