Health Education Research, Vol. 16, No. 4, 403-409,
August 2001
© 2001 Oxford University Press
EDITORIAL |
HIV/AIDS in Europe: the challenge for health promotion research
Director, Thomas Coram Research Unit, Institute of Education, University of London, 27–28 Woburn Square, London WC1H 0AA, UK
There can be little doubt that the epidemiological profile of HIV infection in Europe is beginning to change. In a number of Western European countries, the number of new infections reported each year as a result of sexual and injection-related transmission is beginning to fall. At the same time, however, worryingly high rates of infection are still to be seen among members of especially vulnerable and socially marginalized groups. In Central and Eastern Europe, the number of new infections is rising—partly as a consequence of the economic and social `liberalization' that accompanied the end of the communist period, but also due to a lack of political commitment to HIV prevention.
Highly active anti-retroviral therapy (HAART) has brought about many changes. On the one hand, combination therapies offer new hope to hundreds of thousands of women and men living with HIV disease. On the other hand, there is evidence that HAART may encourage some people to be less consistent in practicing safer sex. New forms of combination therapy also encourage us to rethink the links between prevention and care. Supporting seropositive people to avoid infecting others now becomes a long-term strategy and helping seronegative individuals understand that even if HAART may offer some protection from infection at the level of the population, the risks for the individual remain very real, is of vital importance.
Several other factors offer challenges for HIV prevention and care. Many European countries continue to show ambivalence when it comes to implementing the full range of interventions that are necessary for success in HIV prevention. Only a handful of nations have continued to provide the kinds of consistent mass-media programming that is necessary to prevent people thinking that AIDS has gone away. Too many Governments, in order to avoid public controversy, continue to focus their efforts on `imaginary epidemics' among sectors of the population that are not especially vulnerable—young people en masse, for example. Few countries have changed their health services so as to make them more integrated, accessible and friendly to all (especially drug users).
This progressive `normalization' of the epidemic has been much commented upon. HIV and AIDS-related issues are now being integrated into other aspects of health and social services provision to take their place alongside other more enduring concerns. In some ways this is no bad thing, particularly when professional groups that have hitherto been uninvolved in the epidemic now begin to contribute to prevention and care. The danger arises when the advances brought about by AIDS work, e.g. in patient advocacy, in treatment activism and in human rights, begin to be threatened.
A European approach?
Colleagues working in the USA sometimes admit to feeling under attack when they are asked to explain why their country—the richest in the world—has made so little headway against its domestic epidemics of HIV and AIDS. The models of behaviour change US researchers have sought to develop, the US Government's unwillingness to embrace public health approaches of proven success (such as condom distribution and syringe and needle exchange) and efforts to develop a `science of HIV prevention' sound alien to many European ears. In Europe, the emphasis has been less on science for its own sake, than on scientific understanding as a means to an end, i.e. better prevention and higher quality support and care.
Context and culture, social inequalities and social exclusion, vulnerability and marginalization: these are but a few of the concepts that have been put to work in explaining the patterning of infection. While people may sometimes take individual risks, the context and environment are powerful factors influencing sexual and drug-related social vulnerabilities. Programmes and interventions are needed at several different levels if they are to help individuals avoid infection, and be cared and supported. Such a view has been widely accepted across Europe, and has given rise to some of the pragmatic responses there have been to HIV/AIDS seen in countries such as Norway, the Netherlands and Germany.
Moreover, in contrast to the USA, where social psychological frameworks such as the Health Belief Model, the Theory of Reasoned Action, Protection–Motivation Theory and Social Learning Theory have held sway, European health promotion research on HIV and AIDS has been more eclectic. Theories have tended to be judged for their appropriateness not on the basis of their degree of fit with prevailing schools of thought in the academic literature, but in accordance with whether they offer useful insights for prevention and care. In European countries, it is not unusual for sociological, anthropological and psychological insights to be blended together within prevention programmes. While the prevention models developed this way might not stand `peer review' in the most prestigious academic journals, at least they prevent new infections and improve the quality of people's lives.
Partnership has been identified as one of the qualities underpinning Germany's response to HIV and AIDS (Rosenbrock and Wright, 2000
), whereas pragmatism and consensus have been said to characterize the Dutch response (Sandfort, 1998). In Norway and in Switzerland, and in the UK and in France to a more limited extent, it has been health promotion principles rather than specific psychological or behavioural theories that have guided planning and decision making. The Ottawa Charter for Health Promotion, the Adelaide Declaration and the Jakarta Principles are among some of the international consensus statements that have informed public health responses to HIV and AIDS in a variety of European countries. This desire to identify and promote what `works best' regardless of theoretical niceties is perhaps the hallmark of the European response. It is a quality that should be cherished as we enter more difficult times.
Some emergent priorities
Despite significant progress in HIV prevention and care, a number of challenges remain. Central among these are how to:
- Address the prevention needs of especially vulnerable groups and communities including refugees and asylum seekers.
- Take gender more seriously in HIV and AIDS-related work.
- Re-invigorate prevention work among gay and other homosexually active men.
- Work more successfully with injecting drug users.
- Develop better approaches to adherence to anti-retroviral treatment.
- Respond to the diversity of young people's needs.
- Work better with policy makers so as to influence future provision for prevention and care.
Working with migrants and refugees
A special satellite meeting during the Third European Conference on the Methods and Results of Social and Behavioural Research on AIDS (2000) in Amsterdam highlighted the specific needs of migrants and refugees in the field of AIDS (European AIDS and Mobility Project, 2000). The last few years have seen an increase in levels of migration throughout Europe, and recent wars and civil conflicts have increased the numbers of individuals seeking refuge or asylum outside their own countries.
Across Europe, there are enormous variations in the responses of national authorities to immigrants who are HIV-positive. Not only may migrants find themselves in a disadvantaged position with respect to access to treatment, but also appropriate information and education are often missing. Because of lack of knowledge of the advantages of early testing and treatment, members of migrant groups often contact health care services only when they are already seriously ill. Stigmatization and discrimination remain powerful obstacles to the provision of appropriate information and education.
Health promotion research has an important role to play in identifying and meeting the needs of such groups. It also holds the potential to help us understand better how stigma and discrimination legitimate denial: both the denial of those who are discriminated against (and who therefore are frightened to know their serostatus) and the denial of society more generally that there is an issue here that demands a more socially inclusive response.
Taking gender seriously
Throughout Europe, there is growing awareness of gendered ideologies and stereotypes that render both women and men vulnerable to HIV and AIDS. These are the forces that encourage large numbers of young women to appear ignorant about sex for fear of being labeled `promiscuous'. They are the same factors that make it hard for young men to seek assistance in times of need or stress in the belief that such action is not `manly'. The consequences of this can be disastrous.
Understanding more about the origins of these beliefs, and their implications for the way in which individuals and communities behave, is vitally important for the development of more effective prevention programmes. As Geeta Rao Gupta put it during the Durban International Conference on HIV/AIDS: `Gender roles that disempower women and give men a false sense of power are killing our young, and our women and men in their most productive years. This must change. That is the message that must be communicated—without any caveats, ifs or buts'. Among the issues requiring attention are: the culture of silence that surrounds sex; the forces that dictate that `good' women should be ignorant about sex; traditional norms of virginity which still make it difficult for women to seek information about sex; women's economic dependency on men in many parts of Europe; and male violence against women.
It is important to realize that the same forces that render women susceptible to HIV and AIDS also make men more vulnerable. In particular, and throughout Europe, dominant norms of masculinity encourage men to appear knowledgeable and experienced even when they are not; seek multiple sexual partners when they are able; exercise control over women and homophobic oppression over other men; and fail to seek assistance in times of need or stress in the belief that such action is not `manly'. Taking these issues seriously and recognizing their origins in prevailing (but potentially changeable) gender relations is one reason why men and masculinity were made the focus of the 2000–2001 World AIDS Campaign.
Re-invigorating work with gay men
Since US reports of an upturn in rates of unprotected anal intercourse following the 1996 Vancouver International Conference on AIDS, there has been much debate about the effects of `treatment optimism' on safer sex practices, especially among gay and other homosexually active men. In some European countries, there have been reported increases in levels of unprotected anal sex accompanied by sensationalist media reporting of `bare-backing'. But what does this mean and what are the implications for HIV prevention?
To many health promoters, the term `bare-backing' is not particularly useful because of its imprecision. For some people, bare-backing refers to all unprotected anal sex, even that between seronegative men, whereas for others it refers only to the conscious rejection by men (regardless of their HIV status) of the moral, physical and emotional constraints of safer sex. Like the word `sex' itself, bare-backing calls for tighter and more consistent specification, particularly if our goal is to develop more effective kinds of health promotion. From the point of view of HIV prevention, it matters immensely, for example, whether unprotected anal sex occurs between partners who know themselves to be seronegative, partners who know themselves to be seropositive, partners who do not know their serostatus and partners who have embraced the practice of `negotiated safety'.
Recent qualitative research in the UK is beginning to shed light on the complex risk calculations that some people make in relation to safer sex. Gay men's beliefs about modality, or whether men were `receptive' or `insertive' during sex, are key factors to take into account. Some men who know or believe themselves to be HIV-positive feel that, by taking the receptive role, they run little risk of infecting those who penetrate them. Similarly, some men who know or believe themselves to be uninfected feel that, so long as they are the penetrator, they risk little chance of acquiring HIV from infected men. There is also evidence to suggest that some gay men feel that if a partner has (or asks for) unprotected sex, that partner is implicitly saying something about his HIV status. Such thinking can lead to the exactly the same situation being interpreted in two quite different ways—'He'd only do that if he was already positive' or, conversely, `He'd never do that if he was positive' (Keogh et al., 1998).
Recent interviews with gay men who have not tested positive have revealed a range of special beliefs influencing risk behaviour. With respect to HIV status, for example, (1) a bias towards similarity (`he looks like me, so is likely to share my HIV status') and (2) an optimistic bias (`I hope we both have the same HIV status) have been identified. There is evidence too that men who do not know their serostatus tend to believe that HIV-positive people (1) feel unwell, (2) can be identified by their appearance, (3) are always aware of their HIV status and (4) habitually disclose their status to others. Perhaps in consequence, many gay men's risk reduction strategies tend not to be particularly reliable, particularly in countries such as the UK where there have been few campaigns to encourage knowledge of serostatus and regular testing (Henderson et al., 2000).
What messages can we take from this? Presentations during the Durban International HIV/AIDS Conference (2000) highlighted the range and diversity of gay and other homosexually active men's responses to the epidemic globally. No clear trends or patterns are yet evident. While there is evidence for an overall increase in unprotected sex in some countries, there is no evidence of increase in others. The careful local monitoring of sexual practice is therefore to be advocated, using measures that are sensitive both to the serostatus of the individuals involved and the modalities within which sex occurs. There is a need too for the constant updating of prevention messages for gay and other homosexually active men—we simply cannot afford to assume that the approaches that have worked in the past will work in the future. Sensitive and relevant research has an important role to play here.
Working with injecting drug users
Countries throughout Europe has been at the forefront of work to promote safer sex and safer injection among drug users. Effective programmes include the provision of community-based outreach to drug users, offering HIV prevention education, ensuring access to sterile injecting equipment, expanding drug dependence treatment (including methadone and buprenorphine treatment), and providing voluntary counselling and HIV testing (see http://www.who.int/asd/IDU/IDU_summary.html).
Various European cities that have invested in such programmes have been successful in preventing the epidemic among their drug injectors. Importantly, there is now evidence for the success of such a combined approach from work elsewhere in the world. Such measures have also been effective in reversing the HIV epidemic among drug injectors in New York (where HIV prevalence fell from 51% in 1990 to 29% in 1997) (Des Jarlais et al., 2000a). Over the same period of time, HIV prevalence among injecting drug users stabilized at around 30–40% in Bangkok, Thailand.
However, as Peter Lamptey from Family Health International recently stated, we cannot be complacent (Lamptey, 2000). Programmes need to have political support, be comprehensive and implemented on a large scale to reach as many drug injectors as possible. Failure to provide such adequate coverage will do little to contain the epidemic among injecting drug users. The need to deal positively with local fears and anxieties about the introduction of such schemes must also be taken on board (Malatesta et al., 2000).
Results from the recent Swiss medical trials on the prescription of heroin are worthy of wider attention (Stutzman, 2000). These were originally established to treat severely dependent heroin users who had failed in other drug treatment and had significant health or social problems. Evidence suggests, however, that these programmes have been effective in reducing illicit heroin and cocaine use and needle sharing, and have been associated with a significant reduction in HIV incidence and drug-related deaths. There are important lessons to be learned here for future health promotion efforts among intravenous drug users (IDUs).
It in increasingly clear that injecting drug users, particularly those who are HIV-positive, can take a responsible role in trying to control the epidemic by changing their drug and sexual behaviours. Recent findings from several countries suggest that whereas HIV-negative IDUs may be reluctant to change their sexual behaviours, HIV-positive IDUs showed very significant reductions in sexual risk practices, which were protective for their sexual partners (Des Jarlais et al., 2000b). These findings suggest that future interventions should be targeted at HIV-positive injecting drug users who should be mobilized to promote sexual risk reduction among their HIV-negative injecting peers. Clearly, further research is in this potentially very important area of work is needed.
Promoting better adherence
There has been much recent interest in the most effective ways of promoting adherence to complex drug regimens among people receiving HAART. Some current regimens are among the most complex ever devised and it is increasingly recognized that 100% adherence may not be an achievable goal. Contrary to what was once believed, it is clear that no combination of demographic or socio-economic variables can reliably predict non-adherence. Instead, the individual's situation, the symptoms they are experiencing, the forms of social support to which they have access, the doctor–patient relationship and the general context within which treatment is occurring are all important factors affecting the extent to which adherence can be achieved (Wright, 2000).
While a range of motivational and teaching aids have been developed to help people receiving HAART recognize the importance of taking medications at the right time and while a good relationship with health care professionals can enhance adherence, the existential aspects of participation in complex treatment drug regimes need greater recognition. Not only may HAART be accompanied by serious and sometimes difficult to predict side effects, taking several drugs throughout the day may interfere with work routines as well as social life. We need urgently to understand more about the techniques people use to incorporate the taking of medication into their everyday routines. Recent phenomenological studies conducted in Australia highlight some of the avenues that can be followed in this respect (Race and Wakeford, 2000).
Working with young people
Among its many provisions, the UN Convention on the Rights of the Child assigns to children and young people the right to express their views, and have them considered, in relation to many walks of life. (Every European country has ratified this Convention.) This view of young people as sentient beings, meaning givers and construers of their own reality is very much at odds with some of the dominant tendencies in policy making today. It poses major challenges for those who wish to listen more actively to what young people say and to ensure that health programmes meet young people's needs.
Adolescents are not untypically viewed as `problems' for adults—as wayward individuals whose behaviour needs to be brought into line if they are to be fitted for their proper role in society (Aggleton and Campbell, 2000). Indeed, the very use of the word `adolescent' is symptomatic in this respect, carrying with it strongly biomedical and psychiatric connotations, in Europe at least. How many young people aged between 10 and 20, for example, consider themselves to be `adolescents' or to have the adolescent problems so often ascribed to them by the academic and professional literatures?
It is this kind of confused thinking that has led to young people either being neglected when it comes to HIV prevention (in the belief that they are, or should, remain innocent) or blamed for being promiscuous and irresponsible. The challenge for future health promotion research lies in identifying more carefully what different groups of young people interests and needs might be. The experiences of young women differ considerably from those of young men. The needs of minority ethnic young people are not necessarily the same as those of their majority peers. The needs and experiences of young lesbians and young gay men (be they sexually active or not) may differ considerably from those of their heterosexual counterparts. This is the terrain on which future research should be conducted, within the context of a sharper awareness of rights of all young people to the information and resources that will allow them protection against HIV infection.
Working with policy makers
Social researchers of all types need to work more closely with politicians and decision makers if they are to influence Government responses to the epidemic. Yet all too often this does not occur. There are many reasons why. First, some policy makers lack an adequate understanding of what social science can and cannot do. As a result, they tend to veer between the twin poles of seeing social science as either a panacea with which to manipulate behaviour or an academic irrelevancy.
Second, in a number of European countries, there have been major tensions between social researchers working in public health and those within sociology, cultural studies, education and, to a slightly lesser extent, psychology. In the UK, for example, there was a most unfortunate period in the 1990s when efforts were made to suggest that only social interventions evaluated through randomized controlled trials offered evidence of what worked in the field of prevention—a view resisted by many other social researchers [see, e.g. (Kippax and Van de Ven, 1998; Van de Ven and Aggleton, 1999). Fortunately, a more generous epistemological spirit now prevails, but the legacy of that period cannot be forgotten. Internecine squabbles of this kind do little to give policy makers faith in the value of health promotion research.
Finally, not all researchers have the capacity and desire to explain their ideas carefully to policy makers and practitioners. Indeed, some find it a somewhat `distasteful' to be asked to develop theories that have practical relevance. Others may wish to do so, but lack the skills to work with rapidly changing political agendas. Whatever the cause, we need to develop our understanding of the relationship of social science to the policy-making process. Working more closely with politicians and decision makers is vitally important if momentum is not to be lost, and if the right kinds of questions about the epidemic are to be asked.
Conclusions
Paula Treichler, one of the world's most outstanding social theorists on HIV and AIDS, said last year that to theorize without taking action is to daydream, but to take action without theory is to run the risk of finding yourself in the middle of a nightmare. The challenge for future health promotion research lies in developing useful explanations to guide what must be done in the face of needless numbers of new infections and continued suffering. Contrary to popular belief, health promotion research is neither commonsense nor self-indulgent obfuscation. Rather, it triggers the asking of the kind of critical questions that can lead to the development of better programmes for prevention and care.
As we enter a new millennium, it is important to remember that if there is anything HIV and AIDS so far have taught us, it is that we are in for a long haul. Every time we believe that progress is being made, new problems arise, and every time we think we have HIV tamed, the virus fights back with a vengeance. In this kind of a situation, we need help in thinking clearly: in evaluating between different courses of action, and in deciding what is best for individuals, for their families and for communities. Only by continuing to engage in dialogue can health promotion researchers influence policy and practice, and only by asking the questions that really matter will they make a difference to the future course of the epidemic.
Acknowledgments
I would like to thank Andrew Ball, Mary Crewe, Gary Dowsett, Geeta Rao Gupta, Susan Kippax, Ana Luisa Liguori, Purnima Mane and Richard Parker who contributed to elements of the discussion presented here.
References
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