Annouschka Weijsenfeld (42) is a children's HIV consultant at the AMC (Emma Children's Hospital) in Amsterdam.

Who do you work with on the treatment team?

As children's HIV consultants, we work on the children's HIV treatment team at the Emma Children's Hospital. Our team consists of two doctors, two nursing consultants, a child psychologist, and a social worker. With this team, we aim to offer complete care for children with HIV.

What is the care for children with HIV like?

Complete care means that you not only look at the medical side, for example the physical symptoms, but also at the psychological and social side, how you feel in yourself, whether you have any major concerns, how things are going at school etc. In addition to this, we consider good information to be extremely important. Providing information can ensure that you deal with your illness in a more informed way and can eliminate unnecessary worries. We also believe that children who have questions should be given an honest answer. When children ask questions like: "Why do I have to go to the hospital?" or "Why do I have to take medicine and other children don't?", then we know it's a good time to explain a bit more to a child.

What about in practice? How does informing young people actually work?

Informing children takes place in various stages, depending on the individual, by means of a workbook. We always start by explaining how your body works; what does healthy mean, what does sick mean and what can make you sick. We then explain how the human immune system works. This is all necessary in order to understand later how a virus works and how medication ensures that you do not have to get sick. In the Netherlands, children from the age of twelve are entitled to be given full information about their condition. For children with HIV, this therefore means that they also have the right to know that the virus they are carrying is called HIV.

To tell or not to tell, what happens in the case of children?

For parents this is sometimes a difficult time because they want to protect their child from negative reactions from the outside world. Unfortunately, it's still the case that many people are shocked when they hear that someone has HIV and scared that it's highly infectious. In reality, HIV can't be transmitted that easily at all. If it is known at school that someone has HIV, children can sometimes be excluded or bullied. We discuss with children that it's therefore important to think about it carefully before sharing with someone that they have HIV and to talk about it first with their parents and with us. You don't have to tell people that you have HIV, including at school or later on at work.

In order to make the right choice we look together at what best suits the child. Many children don't feel the need to tell people that they are HIV positive. They don't really want to explain it or talk about it. It doesn't really hinder them much and they prefer to leave things as they are. Others don't like having to hide something. They would rather not tell people, but it bothers them. And others do tell people, such as friends.

Does it ever go wrong?

Telling someone can go well, people are then interested in what it means for you and you feel supported as a result. But it is also possible that you tell someone in confidence and that person then goes on to tell other people, for example, when the friendship is no longer so close.
At times like that it's important for children to know that it's not their fault and that it wasn't wrong to tell; the problem lies with the person who told others! It's about making their own choices and standing by them.
It is obviously very strange that you can normally say to others that you have rheumatism, diabetes or asthma, but that still can't be done easily with HIV. We hope that one day we'll see this change for good, we remain committed to that!

How do you help children to take their medication properly?

In the treatment of HIV, therapy compliance is extremely important. You must take your medication every day and at the same time. Sometimes you may suffer from side effects.
Motivation is therefore very important in order to keep up with it. This starts with good information – ensuring that you know why you need to take medication, what its effect is and what you can do to make taking it as easy as possible.
But it's also important that you feel good in yourself. If you are feeling down and fed up with everything, you quickly start to think about stopping the pills. If you don't take your medication and then become critically ill the next day, this will prompt you to take them. But in this case, you won't notice right away. If you don't take the medication, you won't suffer the effects immediately. So it can be tempting not to take them, you don't have to take anything into account. Sometimes taking medication is also confrontational. It reminds you of the fact that you have HIV. If you become down about it, it's very difficult to carry on.

What if things don't go well with taking medication?

If youngsters have difficulty with their medication, we hope they will tell us. We will never get angry about it. We can then look for a solution together. Sometimes this is relatively straightforward. For example if you suffer from nausea, this can often be remedied with dietary recommendations. Or you can change the time of day that you take the medication if that's a problem, so that you don't have to take the pills in the presence of others.
If you are feeling down because of HIV, then we can also talk about that. Talking really helps and sometimes you just need help to process everything, which is why we also have a child psychologist on our team.
Stopping of your own accord is never a good idea and taking medication occasionally is not good at all. You can develop resistance. Then the virus 'changes its jacket', so that the medication no longer recognizes the virus and can no longer be used. Our main message is: tell us because there's a solution for almost everything!

What if the children don't vocalize problems themselves?

Fortunately, the check-ups that are carried out every three months allow us to quickly see if something is wrong. From the blood test results, we can see whether the virus is well suppressed and whether sufficient medication is present in the blood. Therefore it's never long before we identify a problem.

Do side effects of the medication often occur?

The most common side effects are nausea, sometimes with vomiting, stomach ache and diarrhea. It's often only when you first start taking the medication, but even if you've been taking it for some time already and you start to suffer from one of these side effects, you must say.
Skin rashes, dizziness, sleeping problems and bad dreams can also occur. It varies from one medication to another. When you start taking the medication we explain it all to you.
There is not yet much known about the long-term effects of the medication on your body. We do know that the medication that is now used can ensure that the virus is well suppressed, so that it's sleeping as it were, and that your immune system continues to function properly.

What is the situation regarding sex education for young people with HIV?

If you fall in love and get a boyfriend or girlfriend, HIV obviously doesn't play a role immediately. It's no different than for other young people. When you're a bit older, have a more serious relationship and think about having sex with each other, it's good to know how to do it safely.
We think it's important that young people know how to prevent the virus being transmitted, i.e. by practicing safe sex. That they know exactly how to use a condom, we also practice that. At the same time, we want to emphasize that this obviously not only applies to young people with HIV, but to all young people. You can't tell from the outside if someone has an STD and a condom obviously protects against pregnancy as well.

And what about entering into sexual relationships?

Sometimes young people wait to have sex because they think they have to reveal that they have HIV before they have sex with someone. If you have been with someone for a while, it is sometimes easier because you already know each other and know that you're no different from someone without HIV. But even then it's no easy task, many young people are still afraid of being rejected. The fear is sometimes very real. It's a good idea to have a think beforehand about how someone could react. The young people can also discuss with us the best way to break the news. You can, of course, always bring someone along for a more detailed explanation when you come to visit us.

Do things ever go wrong?

If things do go wrong during sex and the condom splits for example, you can contact the hospital. They will then look at the concentration of the virus in your blood and whether there is any risk. If there is a risk, then ideally within two hours and at most within 72 hours after the incident, the other person must start taking medication for a number of weeks to prevent HIV transmission. The consequence of this is that, if you hadn't already done so, you will need to inform the person that you are HIV positive.
It doesn't happen very often that a condom splits, but I'm also not sure if someone would call us in that situation. We give advice but don't know if it is actually followed in practice.

What about having children?

People with HIV can, in principle, have normal, healthy children without HIV. In any case, women must take medication during their pregnancy. That takes place in consultation with the doctor because you are sometimes put on a different medication. Not all medication is safe for the baby during pregnancy.
It is also possible to have a baby with someone who doesn't have HIV without them becoming infected. To find out how this works exactly, you are best to ask your HIV specialist, as it is different for everyone.

How does the transition to adult care take place?

Transition is a process that runs in parallel to working on independence. It starts when you come into the consulting room on your own at the age of twelve and speak to the nurse and the doctor alone about your health. In the Netherlands you are transferred to adult care when you are eighteen years old. We hope that by this stage, the young people are sufficiently well equipped with medical knowledge to be able to cope with the practicalities, such as managing medication and appointments, and that they know where to go if they have any problems. When a young person reaches 17 and a half, we go to the adult department together and meet the treatment team. The transition doesn't happen from one day to the next. We spread it out over a few months. Afterward we still have contact with each other if necessary.

What else do you do besides providing day-to-day care for the children?

Numerous studies have shown that contact between fellow sufferers can be very important for young people with a chronic condition. It's good to know that you're not the only one and you can exchange experiences and tips with each other. We devote a lot of attention to this. Twice a year, we organize a gathering for youngsters between the ages of twelve and twenty who have HIV and are being treated somewhere in the Netherlands. The first time, we go on a day out together and the second time we go away for a long weekend or a week. Extraordinary friendships develop. Many children keep in contact with each other, even outside of the activities. It is really nice to be in a group in which you can take your pills without having to keep it hidden, and that you can just talk about it. During the week, we put on leisure activities, but also organize workshops, information sessions and quizzes. It is partly about knowledge, how you cope with the stigma and secrecy. But we also just have fun; we play sports and dance together.
It is a very special group and everyone is very open toward each other. Even young people who come for the first time are immediately welcomed into the group – everyone can remember how nerve-racking it was the first time!

Finally, how are these children doing in day-to-day life?

Most children with HIV are just like any other children. They have the same interests and needs, and want to have fun, enter into relationships, discover the world and build their future. I find them quite flexible when I think what some of them have been through. Sometimes they have lost one or both of their parents, often come from another country and have lived in various different places. So I think they're doing really well!