Young people born with HIV have very few outlets to freely speak about their lives with HIV. Parents, care-givers and health workers are often ill-equipped to respond to their needs. As a result, their sexual and reproductive health needs are not adequately addressed. This is what researchers Marnie Vujovic and Saranne Meyersfeld discovered while working children aged 10 ‘€“ 14 who were born with HIV.

‘€œAddressing sexual and reproductive health issues at this age is a particularly important aspect of care. And, in fact, early adolescence is often seen as a window of opportunity where health care providers are afforded the opportunity to reach young people before they become sexually active. Young people can start to acquire the skills, the attitude, the knowledge that they need for their future well-being’€, said Marnie Vuyovic, one of the two researchers who conducted the study.

No one has focused on helping young people who are already HIV-positive. So, Vujovic and Meyersfeld, research consultants for Anova Health Institute, have written a manual to help them.

 ‘€œImportantly, I think, we identified the need for developmentally appropriate resources that would take into account the different needs of HIV-positive boys and girls and, also, we’€™re providing with the information that they need to make responsible decisions about their sexual and reproductive health. This project has really been about developing a reproductive health tool that can be used by health providers to provide HIV-positive children in early adolescence, for example, by building positive gender, attitudes, self-esteem, decision-making, communication skills’€¦ all of those important aspects of well-being’€, Vuyovic said.

Vuyovic said that increased access to antiretroviral therapy and wide-spread HIV testing means that many children infected through mother-to-child HIV transmission are surviving into adolescence and beyond. As a result, the necessity to address their sexual and reproductive health needs is readily apparent.    

‘€œSouth Africa has the highest number of children living with HIV, estimated at around 280 000 below the age of 15. In 2006, there were about 64 000 children who were infected with HIV from their mothers. In the older age group, 15 ‘€“ 18 years of age, children are largely infected through unprotected intercourse’€, she said.

Given the number of children growing up HIV-positive, it is rather startling that a significant number of the children involved in the study were not even aware of their HIV-positive status. Study researchers denied us access to interview the child participants in the study because of that and other ethical considerations. Fellow research consultant, Saranne Meyersfeld, explained why it was that many of the children did not know that they had HIV.

‘€œThis is a very complicated subject. Care-givers (and) parents don’€™t know how to disclose to their kids. They are scared. Stigma, obviously, comes into it. The parents are scared that the child will inadvertently speak about their positive status and, then, it incriminates the entire family, which brings the tidal wave of stigma and discrimination right on the family’€, said Meyersfeld.

However, if possible, she said parents and care-givers to disclose to children as early as possible that they have HIV infection.  

‘€œStart as young as possible’€, she said. ‘€œTake your cue from the child: ‘€˜Why am I going to the hospital’€™? ‘€˜Well, there’€™s a problem with a germ in your blood’€™, at two. There are lots of books that are relatable to advise the care-giver, the parent, the heath care team on appropriate ways of introducing the subject of disclosure to the child. If a child feels comfortable and trust has been built up, there’€™s a lot more chance that they will ask pertinent questions and the care-giver can be guided by them’€, Meyersfeld advised.

She said it is natural that the pertinent questions will take on a different turn as they reach adolescence.

‘€œThey are concerned about disclosure to partners. They are concerned about the possibility of being able to have babies’€.

‘€œSomething that comes up frequently is: ‘€œWill I see myself as a mum or dad in the future’€? ‘€œBut will I be able to have children’€?, Marnie Vujovic concurs.

‘€œAnd those are the kind of questions that are really concerning and those are the kind of questions that we need to be able to answer’€, she said.

She added that the needs and desires of of HIV-positive adolescents are no different from those of their uninfected peers.

‘€œWe also have to bear in mind that being positive does not mean that a young person can’€™t enjoy or express his or her sexuality, but it does mean that they need to deal with the identity of being HIV-positive at an early age. And they will need to negotiate different aspects of the illness which can impact on their sexual and reproductive health’€.    

Vujovic and Meyersfeld believe that the manual will empower parents, care-givers and health care providers to advise HIV-positive adolescents accordingly and that the adolescents themselves will be able to navigate around making healthy choices for their continued well-being.