When HIV-positive children grow up: A critical review of the ‘transition’ literature

HIV Australia | Vol. 11 No. 1 | March 2013

CHRISTY NEWMAN and ASHA PERSSON critique some common assumptions made in international literature about HIV-positive adolescents transitioning to adult care and discuss upcoming Australian qualitative research into the issues.

The global context

An estimated 2.1 million children under 15 years of age are living with HIV around the world today. More than 90% are believed to have been infected through mother-to-child transmission.

During the early epidemic, perinatally acquired HIV was regarded as an inevitably fatal illness in all parts of the world, with death likely to occur in early childhood. This is still the case in many low- and middle-income countries, with only 28% of HIV-positive children receiving antiretroviral treatment in 2009.¹

In contrast, most children living in high-income or ‘developed’ countries such as Australia do have access to treatments and have benefited from medical advances since the mid-nineties, which have had a dramatic impact on their survival and quality of life.

Many of these children are now ageing into adolescence and adulthood, and this has given rise to a growing body of research literature on ‘transition’ issues in this population.

We conducted a critical discourse analysis of the international literature on transition in perinatally-infected HIV-positive children, most of which is from the USA. This literature commonly described these HIV-positive young people as a ‘new’ or ‘emerging’ population in the epidemic.

The most consistent message in this literature was that the transition of children with HIV to adolescence and adulthood brings with it a unique and complex set of challenges and risks, for which clinicians and the children themselves are ill-prepared.

Here is an example from one of the articles we reviewed:

‘Teenage and preteen long-term survivors are a relatively new part of the HIV scene, and AIDS healthcare and service providers are ill-equipped to meet the unique set of needs they present. The reason for this lack of preparedness is simple enough. Put bluntly, these kids weren’t supposed to live this long.’²

Two issues were singled out as particularly challenging, namely transition to adolescent sexuality and transition into adult clinical care. The full analysis can be read in Qualitative Health Research,³but we provide an abridged version of some of the key ideas here.

Transition to adolescent sexuality

Adolescence was commonly framed in the literature as a critical time for perinatally infected youth because it was during this time that their budding sexuality was believed to collide with the difficult realities of having a sexually transmissible disease.

Not only did these adolescents have to negotiate their first sexual experiences with an altered body shape, they also had to confront issues brought about by having a highly stigmatised disease, typically laden with fear and misinformation, as well as having to weigh the possibility of infecting someone else against their own desire for sexual intimacy.

It was this last issue that was of most concern in the literature, seemingly driven by an assumption that these adolescents were either unable or inadequately equipped to manage their own sexuality safely.

This turned on the notion that adolescence is a stage of life in which risk-taking and experimentation with drugs and multiple sexual partnerships begin and escalate, and that there was no reason to believe that HIV-positive adolescents would act any different.

This assumption was often qualified by an admission that little was actually known about the sexual practices of this group, given that perinatally infected adolescents remained relatively under-studied because of their recent emergence in the epidemic.

But this did not prevent their sexuality from being pronounced as a critical concern, even when the authors’ own research findings suggested otherwise.

So despite some evidence that perinatally infected adolescents were less likely to be sexually active, less likely to engage in penetrative sex, were confident in their ability to negotiate safer sex, and sustained their use of condoms over time, authors repeatedly reached this same conclusion: that multilevel prevention initiatives were urgently required to reduce or prevent ‘risky sexual behaviors’ among this population.

One of the few articles that presented a different approach was that of Fernet and colleagues, who did not position these young people as a public health problem in need of constant supervision, but rather recognised that they might already have a good understanding of their situation and might already be employing harm reduction strategies.

On this basis, the authors recommended that what these young people really needed support around was the emotional aspects of dealing with sexuality in the context of HIV, because it was this dimension that was identified as the greatest challenge facing the young participants in their study.⁴

Transition to adult care

Just like any other kind of health care, HIV care is delivered to children in quite different ways depending on the country and setting.

However, the literature on the transition of perinatally infected young people to adult HIV services – which is mostly from the US – represents this as a single and momentous event, usually occurring at or soon after turning 18.

A common concern in this literature related to the capacity of young people to ‘self-manage’ their HIV care, because moving to an adult health service required them to take responsibility for many aspects of their health for the first time, particularly medical appointments, service costs, and medication adherence.

This concern seemed to be often based on the assumption that these young people had been overly protected since birth and were therefore unable to be trusted to look after their own health care needs appropriately.

There were some occasional and implicit suggestions in the literature that some young people might have developed the skills required to successfully transition to adult care. But overall, very little attention was paid to the factors that might support young people in actively participating in this process.

The general picture painted was one of pediatric care providers forming a kind of ‘extended family’ for HIV-positive children that created a safe, supportive environment for them to grow up in, but leaving these young people ill-equipped to face the ‘real’ world of adult care and, potentially, of adult life more generally.

As one young adult with HIV was quoted: ‘When you transition into adult care you have to find a new family’.⁵

And yet there is little real evidence from this literature that considers how young people themselves feel about this.

We also found no research literature on how health care providers can be supported through the process of transitioning young people, a problematic gap when one considers that clinicians are also likely to require emotional support to cope with the end of an often very longstanding care relationship with their young patients.

Nonetheless, this literature was still dominated to a large extent by the concerns of clinicians. Thus there is a significant need to also pay closer attention to the voices and experiences of perinatally infected young people themselves.

The Australian setting

While there is a small cohort of perinatally-infected HIV-positive children who are currently growing up in Australia, no published research exists on this population in this setting.

This is a conspicuous gap because although a relatively small population, they are important in terms of both HIV prevention and the delivery of care, and in terms of the broader aim of promoting the health and wellbeing of people living with HIV in Australia.

The National Centre in HIV Social Research (NCHSR) has developed a qualitative study that aims to produce the first empirical exploration of this cohort in Australia by gathering indepth information both from children and young people with HIV in NSW, and from clinicians who provide direct care to this population across Australia.

This study will provide timely insights into the key issues associated with transition for this largely hidden group in the epidemic, particularly issues associated with becoming sexually active and remaining engaged with HIV treatment and care during a time of life that typically features considerable change.

There is no doubt that growing up with a stigmatised, chronic and sexually transmissible disease can pose numerous and complex challenges, or that substantial support might be required to help young people navigate this process.

However, the existing transition literature tends to uncritically reproduce a limited repertoire of assumed facts about children with HIV.

This literature rarely considers the possibility that these young people might have developed, for instance, resilience, foresight, coping strategies, expertise, or life skills as a result of their illness.

It also rarely includes the views and experiences of the young people themselves.

In contrast, our study hopes to describe the perspectives of HIV-positive children and young people themselves to gain a better understanding of how they address the challenges of growing up with HIV, and to provide them with a unique opportunity to tell their stories and contribute to the knowledge base to inform future models of care.

Paying more deliberate attention to these young people as a vital source of knowledge and information about what it means to grow up with HIV could offer invaluable insights into how clinical and psychosocial care services can most appropriately support them as they move into adulthood.

Getting involved

We are very grateful to have been recently awarded a Gilead Fellowship Grant to assist us with the costs of conducting interviews with children and young people living with HIV in NSW.

We are also continuing to interview clinicians (doctors, nurses, social workers, counsellors and so on) who provide care to this population around Australia.

We are very keen to hear from anyone interested in taking part in an interview, so please don’t hesitate to contact Asha Persson at a.persson@unsw.edu.au, or Christy Newman at c.newman@unsw.edu.au at any point during 2013.

The study is conducted in collaboration with the Paediatric HIV Service at Sydney Children’s Hospital, and in close consultation with several partner organisations, including the Australasian Society for HIV Medicine (ASHM), the National Association of People with HIV Australia (NAPWHA), Positive Life NSW, and YEAH (Youth Empowerment Against HIV/AIDS).

References

1 UNICEF. (2010). Childinfo: Monitoring the situation of children and women – HIV/AIDS. Retrieved from: www.childinfo.org/hiv_aids.html

2 Engle, L. (1999). Growing up positive. Body Positive, 12(8), 18–23. Retrieved from: www.thebody.com

3 Persson, A., Newman, C. (2012). When HIV-positive children grow up: A critical analysis of the transition literature in developed countries. Qualitative Health Research, 22(5), 656–667.

4 Fernet, M., Proulx-Boucher, K., Richard, M., Levy, J., Otis, J., Samson, J., et. al. (2007). Issues of sexuality and prevention among adolescents living with HIV/AIDS since birth. The Canadian Journal of Human Sexuality, 16(3–4), 101–111. Retrieved from: www.sieccan.org

5 Vázquez, E. (2006). No longer a child: Transitioning into adult care terrifies youth with HIV. Positively Aware: The Monthly Journal of the Test Positive Aware Network, 17, 19–20. Retrieved from: http://tpan.com

Dr Christy Newman is Senior Research Fellow and Postgraduate Research Coordinator at the National Centre in HIV Social Research. Dr Asha Persson is Research Fellow at the National Centre in HIV Social Research.