What drove you to focus more on the social aspects of HIV rather than the biomedical?
When I was a psychology student, at what is now called Radboud University Nijmegen (the Netherlands), my interest was in understanding and changing the factors that shape people’s experiences and behaviours. I was in particular fascinated by theories of attitudes and attitude change, through communication. When I became aware of the HIV epidemic in the 1980s and had to decide on a topic for my master’s thesis, it seemed logical to look at the efficacy of HIV education in schools. This first research experience made me realise just how difficult it is to change people’s beliefs, attitudes and practices.
My research over the 20 years since that early experience has been concerned with what I consider not only the most fascinating riddle of them all, but also a key component of an effective HIV response: the question why we do what we do, even if it can put us in harm’s way, and why we don’t always do what would be beneficial for us. These issues are not only relevant to promoting condom use, but also lie at the heart of making biomedical responses successful, be it for treatment or prevention. Ultimately it comes down to whether and why (or why not) people effectively engage with the options they have to protect themselves and others.
Can you explain the idea behind individual self-regulation and how it impacts HIV spread?
People’s behaviours are affected by a wide range of personal, social and structural factors, and some of our desires and aspirations are in conflict with one another. A self-regulation approach recognizes that much of people’s behaviour is affected by competing interests, which often entails a conflict: a longer-term goal to be healthy and wise and a short-term temptation that can put our health, wealth and relations at risk. The self-regulation dilemma that directly affects the spread of HIV is that between unrestrained enjoyment of one’s sexuality and relationships and the need to remain vigilant to prevent transmission of HIV and other sexually transmissible infections or blood-borne viruses.
Whereas in the cold light of day most people assume that they themselves would of course opt for protecting their health, this dilemma plays out quite differently in the heat of the moment. A self-regulation approach underscores the importance of understanding and addressing the very powerful factors that influence people’s decisions, such as their passions, desires and social norms, often without them being aware or constructing rationalisations they later regret.
Importantly, a self-regulation perspective underscores that when people take risks that may jeopardize their health, which need not reflect ignorance or complacency. Rather, it reflects one possible outcome or the interplay between a range of factors in a specific context. Consequently, prevention responses need to go beyond educating people and include strategies to facilitate people acting on their good intentions when they most need it. This can be done by interventions that help people plan ahead and by placing cues in home and social settings to remind people of the importance of playing safe.
How does your research translate across other cultures and societies?
The cross-cultural validity of many conceptual perspectives or theories of behaviour, and related prevention and health promotion approaches, is contested and is essentially an empirical question. A self-regulation approach assumes, as a universal principle, that people are guided by goals that can be in conflict, which needs to be resolved. It does however not make any assumptions about the nature of one’s goals and whether they are of a person’s choosing or reflect social expectations. As such, the approach would hold wide value, albeit that adaptation may be required to ensure fit across cultures and societies.
Documenting evidence of the importance and effectiveness of such adaptions would be invaluable in strengthening understanding of how social and cultural differences play out and can be addressed. What is needed is a scientific approach that systematically examines factors that affect the translation of approaches. It also must move beyond widespread, overly general assumptions that every cultural context is so different that approaches require extensive adaptation, if translation is at all possible.
While cultural and social differences attract substantial attention, it remains to be established how profound these are. Also, similarities may be more substantial but go largely unnoticed. That is not to say that there are no differences between local contexts that are of influence. There are many factors, such as laws, customs and policies, that affect what behaviour is appropriate (for whom) and what resources are available to people. The importance of these critical enablers does however not invalidate a conceptual perspective per se; it suggests moderating factors that need to be examined.
What has made AIDS such a potent disease compared to other sexually transmitted infections, and why is it proving so difficult to combat?
When AIDS was first brought to the attention of the general public, in the mid-1980s, it caused a level of fear in many societies that came about due to a combination of factors. First and foremost, AIDS at that time was an acute, lethal condition that came with horrendous symptoms and suffering that for many had been unimaginable in modern times. Secondly, AIDS affected many people in the prime of their lives, at an age that people typically say is far too young to die.
Thirdly, most people got AIDS through sex, affecting some of our most private and intimate experiences, and touching upon some of the most profound social taboos and stigmas. Fourthly, being transmitted by an invisible infectious agent surrounded the spread of AIDS with a sense of uncontrollability and made people fear that they too may have been affected, in particular in the early days of the epidemic.
Fifthly, to motivate the public to take appropriate precautions, many governments in the second half of the 1980s commissioned public education campaigns that made use of so-called ‘fear appeals’. These are approaches to health communication that aim to portray the seriousness and severity of a condition, AIDS in this case, with the assumption that that is required to motivate people to protect themselves and others. The evidence-base for such approaches is however mixed at best. It seems much more important, and much more difficult, to convince people at risk that they personally may become affected.
Common STIs currently lack many of the properties that make AIDS such a powerful experience. However, this would have been substantially different before the advent of antibiotics to treat bacterial STIs, as remaining materials used in campaigns to combat venereal diseases in pre-War eras remind us. People are also typically quite concerned about STIs and find them serious conditions. As with HIV, however, people typically don’t think they are likely to get it. As with bacterial STIs, the advent of effective treatment has significantly altered people’s perceptions of the threat of HIV. Ironically, and an illustration of the self-regulation dilemma, this reduced health threat facilitates the increased risk taking that underlies the rise in HIV diagnoses among gay men that started when effective treatments became available.
Can you give a brief overview of other research being carried out at the Centre for Social Research in Health?
The Centre for Social Research in Health is the successor of the National Centre in HIV Social Research, which was established in 1990 as part of the Australian Government’s response to HIV. The Centre has since developed a program of research that encompasses the social and behavioural aspects of responses to HIV, STIs and viral hepatitis. Research with respect to HIV and sexual health risk and risk reduction, in particular with gay men and young people, remains one of the priority areas of the Centre. The Centre also undertakes research regarding sexuality, health and education, including work with respect to the expression of sexuality and sexual identities, the wellbeing of sexual and gender diverse individuals and communities, and research informing sexuality education.
Research regarding Viral hepatitis, injecting drug use and harm reduction reflects a further area of expertise, focusing on hepatitis C risk and prevention, including vaccines, examining the injecting of illicit drugs, and investigating risk and harm reduction in intimate relationships. Our research with respect to living with and treatment of serious and chronic conditions encompasses studies of the impact and lived experience of health-related conditions on those directly affected, their carers and their communities. It also includes investigations into appropriate healthcare models as well as issues that face the health workforce. A last area of research strength is related to health promotion development and evaluation, which is concerned with developing innovative prevention, diagnosis, treatment and care responses and improving existing programs and services.
Why did you decide to join the HIV and AIDS editorial board?
As an active researcher, I consider it part of my responsibility to contribute to the publication process. The decision to join the HIV and AIDS editorial board was an easy one. The Frontiers journals have the future and represent a whole new way of publishing, networking and gauging impact. The journals bring together some of the best people in the field and the HIV and AIDS editorial board consists of an impressive set of colleagues, led by a highly respected and energetic specialty chief editor, Prof Frank Miedema. It was an honour to be invited to join.
What do you hope to bring to the section?
My commitment is to contribute to the success of the section, by building its profile and reputation. I hope to do that by attracting high quality papers from leading authors, in particular in behavioural and social research that addresses the breadth of the issues related to HIV prevention, testing, treatment and care. I am also very much looking forward to working closely with authors in the review process. Rather than the hands-off and anonymous review process that authors are so familiar with, Frontiers has a unique, collaborative model that I am very comfortable with and believe in. The engagement around ideas and the vibrant exchange that creates is very exciting part of the role as editorial board member.
John de Wit, MSc, PhD, is professor and director of the Centre for Social Research in Health at the University of New South Wales, Sydney, Australia. He is also a visiting professor in social psychology of health and sexuality at Utrecht University, the Netherlands.
John has been undertaking and leading behavioural and social research regarding HIV, STI and sexual health for over 20 years, and his expertise and interest is especially with theory-informed research into the individual, social and structural factors that shape effective prevention, diagnosis and treatment.
You can follow the work of Prof John de Wit on the Frontiers Research Network.
Read a selection of Frontiers research articles on HIV and AIDS here.
This interview with Prof John de Wit was conducted and edited by Laurence Pope, Press Assistant at Frontiers.