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Educating about HIV: prevention, impact mitigation and care

Aggleton, Petera; Clarke, Davidb; Crewe, Maryc; Kippax, Susand; Parker, Richarde; Yankah, Ekuab

doi: 10.1097/QAD.0b013e3283536bc5
Special Reviews

Since very early in the epidemic, education has been identified as central to an effective response. Three different kinds of education can be distinguished: education for HIV prevention, education about treatment, and education to prevent or mitigate the negative effects of the epidemic. This article also considers three different contexts in which education takes place: in schools, at the level of specific groups and across society as a whole. Some 30 years into the epidemic, it is vital that the potential of education is more fully recognized and embraced, not only by agencies and individuals with special expertise in the field (although this is essential), but also by everyone seeking to contribute to the ambitious goals of zero new infections, zero discrimination and zero AIDS-related deaths.

aNational Centre in HIV Social Research, Faculty of Arts and Social Sciences, University of New South Wales, Sydney, Australia

bIndependent Consultant in HIV and Education, Bangkok, Thailand

cCentre for Study of AIDS, University of Pretoria, South Africa

dSocial Policy Research Centre, Faculty of Arts and Social Sciences, University of New South Wales, Sydney, Australia

eDepartment of Sociomedical Sciences, Mailman School of Public Health, Columbia University, New York, USA.

Correspondence to Professor Peter Aggleton, National Centre in HIV Social Research, Faculty of Arts and Social Sciences, The University of New South Wales, Kensington, Sydney, NSW 2052, Australia. E-mail:

Received 23 February, 2012

Accepted 7 March, 2012

Very early in the epidemic, education was recognized as central to an effective response. But what exactly do we mean by education? What kinds of education work best? What can school and community education offer? And what role does education have in bringing about the kinds of social change prefigured by Joint United Nations Programme on HIV/AIDS (UNAIDS) (2011) ambitious goals of zero new infections, zero discrimination and zero AIDS-related deaths [1]?

Giving prevention messages about HIV is often confused with AIDS ‘education’ in a broader sense. There is a very real difference between educating people about HIV and simply giving them information about prevention. HIV engages in a very wide range of issues: from prejudice and discrimination to hope for the future; from individual behaviours and responses to the survival of communities; and from information about medications to guidance on how communities and individuals can ‘live well’ with the epidemic.

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Types of education

There are many different kinds of education. They include didactic approaches, participatory forms of education and strategies that encourage people to reflect critically on their experience. Each different type of education can be effective. However, if people experience engaging and life changing forms of education they are more likely to have a better understanding of HIV and its impact on society, communities and lives (Figs 1 and 2) [2,3].

Fig. 1

Fig. 1

Fig. 2

Fig. 2

Good quality education encourages curiosity and a willingness to discuss what is being said or advocated for [4,5]. Good quality education encourages people to know that they can always improve their understanding of the world [6]. Good quality education allows people to reflect upon failure when they have tried to take action and have not succeeded [6]. Good quality education is not about abstinence or other forms of moral prescription. It is about helping people appreciate the many options available to them, while being able to understand and take responsibility for the choices they make [7].

Poorer quality education encourages social prejudice, stigma and discrimination. Much education about HIV has been bad in this sense because it operates with the binaries: good and bad, right and wrong, moral and immoral and acceptable and unacceptable. This confuses people who come from communities where different forms of understanding and tolerance are present. Poor quality education also takes place when people are not regarded as old or mature enough to be given a full understanding of HIV, sexual and drug-related transmission. Bad education is also often premised on dishonesty and on advice such as ‘just say no to sex or drugs’.

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Three types of education about HIV and AIDS

Of relevance to HIV, at least three different kinds of education can be distinguished [8].

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Education for HIV prevention

Education for HIV prevention aims to give people information that protects against infection: information about routes of transmission, condom use, lubrication, blood risks and safe and risky sexual practices. Messages should be clear, unambiguous and honest so people are confident to act on them. People need to be educated about how to access condoms, clean needles and syringes, health services, HIV testing, the implications of the test, counseling and support and treatments and how they work.

Education also involves understanding there are occasions when applying practical information may be difficult or may have negative consequences such as intimate partner violence, social rejection and personal and social anxiety. This kind of education is critical if the practical aspects of prevention are to be effective. Prevention education must address the social and economic drivers of the epidemic; contexts of risk including the various contexts of injecting drug use; sexualities, sexual identities and practices; stigma and self-reflection. It needs to allow for discussion of failure and the relationship between personal agency and social pressure to conform.

Beyond this, good quality education is about creating future leaders, people who really understand the epidemic and a generation committed to equality, able to imagine a world that is being fundamentally changed by this epidemic.

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Treatment education

Treatment education involves more than the provision of information about antiretroviral treatment (ART) and how it works [9]. HIV has emotional and social dimensions, which affect how people understand treatment drugs and adherence. Poverty, inadequate housing, limited support from community networks, and limited access to social services increase the difficulties for people needing treatment or accessing it for family members.

To be effective, treatment education should embrace learning about good nutrition, managing side effects and establishing a relationship with a trusted healthcare worker. Treatment education also requires a focus on treatment adherence, failure and fatigue, illness and death. Given the growing number of ARTs available, it is also important to know what the combinations are, how they work, and what options are available [10].

Treatment education is a fundamental to the training of healthcare workers and needs to be linked to prevention education and stigma reduction [9,11,12]. There are special issues to address in treatment education for children, some of whom may still be developing their capacity to understand and cope. Caregivers also need good education about treatment, its effects on children, adherence and how best to inform teachers and others with whom young people may be in contact [9].

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Education to mitigate the effects of HIV and AIDS

HIV brings out the best and the worst in people. Negatively, it gives rise to stigma, discrimination and the abuse of human rights [13]. Although not by itself the solution, as part of a broader package of measures including legal and structural intervention [14], education can help people gain a better understanding of freedoms, rights and dignity. It can also help communities recognize that social prejudice and political silence and inaction affect the strength of stigma.

Good quality education aims to mitigate the negative consequences of HIV, to address issues of human dignity and to promote the right to privacy and freedom from discrimination [15]. It allows people to understand the right to access good healthcare, education, food, water and social security and the reasons why this may have been denied to people living with HIV, their families and their partners. It involves examining historically the roots of discrimination and how stigma has affected the lives of people for different kinds of issues [16].

Central in this respect are issues of race, xenophobia, sex, disability, sexual prejudice and social class. Addressing stigma through these lenses helps to situate HIV-related stigma in its wider social context [8,17] (Table 1).

Table 1

Table 1

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Settings and contexts

In the remainder of this article we will consider three rather different contexts in which education about HIV and AIDS occurs: in schools and related settings (with examples selected from a range of different contexts); at the level of specific groups and communities (here the focus will be explicitly on gay community) and across society as a whole (as part of a broader struggles for social change).

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School education

By implementing good quality HIV education, schools have the potential to arrest and turn back the epidemic, not only in the worst affected countries but globally. The education system is well-placed to reach almost all young people before they begin their sexual lives and economies of scale can make HIV education highly cost effective [18]. However, this potential is far from appropriately exploited, even in the most affected countries (Table 2).

Table 2

Table 2

Under the right conditions, school-based HIV education can be highly effective. A systematic review of the evidence from evaluations of school-based HIV education in developing countries found that it can increase knowledge, improve attitudes towards people living with HIV and result in reduced sexual risk behaviour, provided it is appropriately designed and implemented [19,20].

Although what is deemed ‘appropriate’ will differ by country, two studies of sex education policies demonstrate the importance of comprehensive and pragmatic sex education. An analysis comparing school-based sex education policies and indicators of sexual health among young people in the developed world indicates that those countries such as France and the Netherlands, with sex-positive government policies have better sexual health-related statistics than countries such as the United States with a primarily sexual abstinence-based policy [21]. Another study comparing states in the United States with information on sex education laws and policies (48 states) clearly demonstrates that abstinence-only education as a state policy is ineffective in preventing teenage pregnancies and may actually be contributing to them [22].

In addition, education alone is protective. In southern Africa, there is strong evidence to suggest that simply keeping girls in schools longer leads to less unprotected sex, and that more education is associated with greater reduction in risky behaviour [23]. Increasing school enrolment at primary and secondary level, especially for girls, and providing good quality HIV education is part of a multicomponent or ‘combination’ prevention approach advocated by UNAIDS [24].

In order to impact at a population level, the HIV education curriculum needs to engage with local risks. The curriculum then needs to be effectively implemented at a system level to achieve high levels of coverage. Nationally implemented core curriculum and cocurricular activities can be supplemented by local curriculum initiatives where available. However, data suggest that in many of the worst affected countries, levels of implementation remain low (Fig. 3).

Fig. 3

Fig. 3

Fidelity of implementation is important, but the uneven and inequitable implementation of HIV-related education is regularly reported. For example, in the Caribbean, the implementation of Health and Family Life Education, through which HIV is often addressed, has been variable with different numbers of hours taught and a lack of standardization of what is taught [25].

In order to realize the potential of schools for preventing HIV, there is a need for a stronger focus on learning outcomes. Schools need to manage the inputs required such as teaching and learning materials, teaching methods, timetabling, cocurricular activities and assessment as well as community engagement through links with health services and organizations of people living with HIV. There is a need for school level planning to operationalize national education sector HIV policies and to assign roles and responsibilities for delivery of identified outcomes (Table 3).

Table 3

Table 3

To date, little attention has been paid to how to create incentives for teachers to put training into practice in schools. Motivating teachers to deliver HIV education is critical for effectiveness [26]. This approach is particularly important in view of the social sensitivity of the topics to be addressed and the need to build teacher confidence [27]. The additional workload that may be entailed is another factor. Curricula are commonly overcrowded, and in some countries teacher absenteeism needs to be addressed [28]. Suitable incentives do not necessarily involve financial compensation and may include recognition, improved qualifications and status, career path enhancement and increased accountability [29,30].

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Community education

High levels of social capital are central to the successful rollout of HIV-prevention programmes, to the development of treatment literacy and to mitigate the impact of HIV and AIDS [31,32]. Sex workers, injecting drug users and gay men have all in a variety of ways demonstrated that together they can reduce HIV transmission risk within their communities and networks [33–35].

Gay communities, especially those in the income-rich world, best illustrate this effect. Their already strong sense of solidarity – often formed in response to stigma and discrimination – and their dense horizontal networks with norms of trust and reciprocity enabled them to respond quickly and effectively. Gay men in Europe, United States and Canada, and Australasia came together to educate and care for each other and to advocate for treatment and prevention [35]. Although the experience of the gay response to HIV in each country has been different, there are many similarities.

By way of example, in Australia from the mid-1980s gay men provided voluntary, largely untrained care to people living with AIDS in their homes, and then quickly organized to create organizations such as the Community Support Network and the Bobby Goldsmith Foundation to provide assistance to gay men with AIDS [36]. Community activists knowing that AIDS threatened to undo much that had been achieved during gay liberation unless men's sexual practice was safe, turned their attention to education programmes and established AIDS Action Committees. The first was in Sydney in May 1983 and then later in other capital cities [37]. These committees, later known as AIDS Councils, lobbied the government to provide care and support for people living with HIV and AIDS, access to HIV prevention technologies and treatments and funds for HIV-prevention education, including but not restricted to gay men, injecting drug users and sex workers affected by HIV [38,39] (Fig. 4).

Fig. 4

Fig. 4

In most, if not all, income-rich countries, the initial response among gay men was highly effective. Between 1986 and 1987 and 1996 and 1997, in North America, Western Europe and Australasia, there was a major uptake of prevention by gay men: increased condom use in anal intercourse and an expansion of the ‘safe’ sexual repertoire [40]. Although a direct causal relationship between education and the decline in HIV is difficult to establish, a study of Sydney gay men documented a major relationship between attachment to and engagement in gay community and the use of condoms [39,41]. Notwithstanding more recent increases in HIV transmission among gay men in some settings [38], social relationships between gay men, reinforced by their membership in community, continue to mitigate the impact of HIV.

Crucially, by acting together ‘educatively’, as members of a community rather than individually, gay men exercised a collective rationality, literally creating the notion of safe or ‘safer’ sex [42]. Public health strategies such as these recognize not only the insight that heavily affected groups are able to bring to their engagement with the epidemic, but also that people are not just individuals but members of networks and collectives. These strategies rely on the fact that people interact, talk, negotiate and have sex together. They recognize that social relationships and their transformation through education and communication, lay the foundations for positive change.

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Education, activism and the broader societal response

In Brazil, a range of innovative initiatives offer further examples of the potential of education to effect change, both at individual and society-wide levels. Early in the epidemic, AIDS activists and civil society organizations were deeply dissatisfied with what they viewed as the stigma and discrimination implicit in initial public health campaigns focusing on HIV prevention [43]. They turned, therefore, to the long tradition of popular education that had been developed in Brazil and more broadly in Latin America as a possible alternative to what they viewed as the ‘technocratic’ and fearful messages promoted by the then Ministry of Health's National AIDS Programme [44].

Drawing inspiration from the work of educators such as Freire [6] and his notion of a ‘pedagogy of the oppressed’, activists and civil society organizations began to develop innovative demonstration projects. Young people and other vulnerable populations and communities were enabled to develop their own unique approaches to HIV prevention [45]. Rejecting what Freire described as ‘a banking style’ of education, in which expert educators ‘deposit’ supposedly scientific facts in the ‘deficit’ informational accounts of an intended target audience, they opted instead for an approach using critical consciousness. They aimed to ‘de-code’ mainstream messages about gender, sexuality and HIV, and to ‘re-code’ AIDS education in ways that were culturally and linguistically meaningful [45,46].

Under Freire's own leadership, from 1989–1992, while he was the Municipal Secretary of Education, a pioneering Projeto AIDS (AIDS Project) was implemented in the City of São Paulo school system [47,48], 1993. This project later gave rise to APTA (the Association for the Prevention and Treatment of AIDS) that went on for more than a decade to organize training activities for education professionals engaged in the efforts to prevent HIV. APTA ultimately working in more than 400 municipalities and 26 states in Brazil, emphasized the reduction of social vulnerabilities among the school-aged population rather than simply behavioural risk [49,50].

Other NGOs, as well as universities, played a key role in developing work later scaled-up through government programmes. From the early to mid-1990s, in Rio de Janeiro, for example, ABIA (the Brazilian Interdisciplinary AIDS Association) developed the Projeto Viva a Vida (The Live Life Project) in partnership with municipal governments in different regions of the country. Through this program, community-based AIDS activists provided training on HIV and sexuality to teams of teachers [47].

From the early 1990s through the early 2000s, at the University of São Paulo, an interdisciplinary HIV Prevention Research Centre created a program known as Fazendo Arte com a Camisinha (Making Art with the Condom) for inner-city night school youth using artistic activities and Freire-inspired methods to create sex-positive and youth-centred AIDS education. Over time, this work expanded to produce key HIV and AIDS education materials for the São Paulo state school system [45,46].

As a result of this activity, pioneering HIV and AIDS education projects initially developed by community-based activists, social researchers and progressive educators, were implanted in the public school system. By 2003, these had been taken to scale nationally through a partnership between the Brazilian Ministry of Health and the Ministry of Education, with additional support from United Nations Educational, Scientific and Cultural Organization and United Nations Children's Fund [51]. Equally important AIDS education programmes provided financial support and methodological inspiration for an increasingly broader focus on sexual health, sexual diversity and sexual rights [52,53].

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The potential of education to contribute to HIV prevention and treatment goals, as well as to efforts to reduce HIV-related stigma and promote human rights, is immense. Yet too often education has been misconstrued as the ‘provision of information’, rather than the more broad-based educative process that it is. Some thirty years into the epidemic, it is appropriate for the potential of education to be more fully recognized, not only by agencies and individuals with special expertise in the field, although this is essential, but by all those seeking to achieve ambitious goals such as those set out in the year 2011 Political Declaration on HIV/AIDS [54] and by UNAIDS in its concern to ensure Zero new infections, Zero discrimination and Zero AIDS-related Deaths.

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Conflicts of interest

There are no conflicts of interest.

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care; education; HIV; impact mitigation; prevention

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