Linde Scholten (30) is a child psychologist at Amsterdam University Medical Centers (location AMC). She is part of the children's HIV team.

How do children with HIV come to you?

The children are referred by the pediatrician or nursing consultant for various reasons. For example, because they have been told that they have HIV or to find out how they're getting on. I also see them if they have social or emotional problems, or if things aren't going well at school.

How many children a year do you see?

About twenty.

Where do these children come from?

They are generally children from Africa with African parents or adopted by Dutch parents, but they also come from Suriname and other countries around the world. They are often single-parent families with brothers and sisters.

When are they told that they have HIV?

I see the children at around the age of ten or eleven, before they know about their condition. We would like them to know before they turn twelve, and that's also a legal requirement. But if a child has questions earlier, then we would rather tell them sooner. We don't want a child to keep wandering around with lots of unanswered questions. In those cases, I talk to the child to find out if they already know what they have, how it's going with the medication and if they have any questions.

What do the children know themselves?

Usually that they have something wrong with them for which they need to go to the doctor and take pills. Some of them talk about pills to stay healthy or pills that they have to take to prevent them from getting sick. And others know that there is something wrong with their blood. So most of them know that they have something for which they need to take pills, but not what it's called.

What do you do at an intake appointment?

I ask questions. About how they find it in the hospital, what they have and why they need to take pills. And about how things will continue for them, with friends, school, contact with their parents and within the family. So lots of different things. We work in a multidisciplinary team, with a doctor, nurse, social worker and psychologist. After the intake I give advice to the team. The doctor and nursing consultant then tell the child that they have HIV.

Do you also carry out psychological assessments?

If necessary, I perform psychological assessments. An intelligence or neuropsychological assessment that focuses on cognitive functioning and learning. Or I carry out an assessment of the child's socio-emotional functioning. I do this using questionnaires and through talking with the child.

Do you have another intake appointment with the parents?

Yes, usually separately with the parents. I ask a lot of questions about the child, about their development, what there interests are, how they behave.

What are the most common problems?

Lack of therapy compliance, but there are often other psychosocial problems behind this. It may be that children are feeling down and worried. Many children feel alone. Even if they take their pills well, they can feel down or anxious and start to worry.

What do they worry about?

About isolation, I hear that the most. That they feel alone, that they're not allowed or don't dare to tell other people and don't feel supported. Children sometimes also worry about the future, how they will grow up with HIV.

How do the children deal with this?

It's different for each child. Some deal with it well. They find it annoying but it's part of who they are and they try to take care of themselves as well as possible. Others find it more difficult, but that also depends on external factors, such as how the family deals with it and how the people around them react. It also depends on the child's character. Children who don't talk about the illness and hide it away, often feel more down and worry more. Socio-emotional problems often play a part in a lack of therapy compliance.

Are they ever obstinate?

Yes, just like many teenagers are sometimes. They are developing their identity and such a nasty disease doesn't fit in with that, or having to take pills.

Is taking the pills a challenge?

Despite the fact that many children cope with it very well, taking medication is more of a burden than you think. The pills are quite large, which also makes it difficult. You have to remember to take them every day at the same time. This tends to be easier on school days than during vacations or on the weekend. That's when problems often occur. They go out and forget the tablets that they have to take in the evening. That can cause long-term problems. You won't notice anything in the short term but things will be going wrong in your blood, which is the dangerous thing about HIV.

What can you do about it?

Sometimes it's not too bad and you can get them back on track with a few pieces of advice, but sometimes it's harder and more treatment is needed.

What is the situation with hygiene and safe sex?

Sexual development with HIV isn't as easy as for healthy young people. They know that it can be sexually transmitted and some of them find that so terrible that they do not want to have sex at all. Others do develop sexually and ensure they do it safely, and then there are others who do it less safely. It causes more worry than for someone healthy.

Does unsafe sex have immediate consequences?

If they take their pills well, they are less contagious. In that case, it doesn't necessarily lead to transmission of the virus immediately, but there is always a risk. Not just of HIV, but also of other STDs and unwanted pregnancies. So we always say that they must practice safe sex, that's usually the task of the nurse. It's a very important part of our work. All young people are taught about condoms, safe sex and that sort of thing. I also talk about it; how they deal with it, how they feel about it and so on.

How do most of them feel?

Most kids can lead a very healthy, good and normal life. But their illness sometimes brings with it concerns, especially because of the taboos, the stigma and the loneliness that surrounds it. In principle, you can become a healthy, happy adult with HIV, but with some adjustments.

Do you get results with your treatment?

Some problems are easy to solve with a few pieces of advice. But sometimes there are so many problems in the family or in the environment that it's very difficult for a child to talk about themselves, then I'm worried. But those are the exceptions.

Does therapy compliance get better as they get older?

Yes, with all chronic conditions, adolescence is the hardest time. Children think about the short term. When you get older, your brain is better developed and you gain a better overview of everything.

What role does faith play in the treatment and guidance of children with HIV?

For some parents, but also for the children with HIV, faith plays an important role. In general, religion can be a good source of support for people, and therefore also for the parents. But if you believe that the illness is a punishment from God, then that can cause problems. Also if you think that God can cure the illness, it's difficult to talk about medication.

Can the mother's sense of guilt pose a problem for the child?

That is a very difficult subject. A lot of mothers who are infected with HIV themselves and then became pregnant, don't talk about it. It's hidden away. But it's a major wound. It can affect the relationship with the child and that's not good. But it's not the mother's fault, nobody wants to contract this virus.

What is the situation with cognitive development?

The virus and the medication do not have a positive effect on the brain and cognitive development. I see a lot of children with learning or concentration difficulties or who have slower reactions. Only it's never entirely clear whether that's due to HIV or other factors. In the literature on the subject, it is well known that the virus can cause damage.

How is it in the rest of the Netherlands? Do all HIV teams have a psychologist?

The Amsterdam University Medical Centers (location AMC) is the only multi-disciplinary children's HIV team with a psychologist. Unfortunately, it's not the case at other hospitals. This is despite the large number of psychosocial problems in this group and indeed with any chronic condition. The hospitals often refer patients to a psychologist outside of the hospital. Because HIV is surrounded by so much stigma and taboo, it is however much nicer if the child doesn't have to explain to yet more people at another place that they have HIV. A psychologist at the hospital can also collaborate better with the doctor and nurse, and appointments can be combined more easily.