Enhancing the health and social wellbeing of children and young people living with HIV

What Age?

This is a question often asked by parents. If your child has HIV, then there are guidelines that doctors and nurses work to, and they will talk to you about this. If your child does not have HIV, then it is your decision when you tell your child that you are living with HIV.

Children living with HIV

A child with HIV needs to know what is happening to them so they can keep themselves well and not feel scared or confused. CHIVA believes there are benefits to telling a child at a younger age and now suggest it is helpful for a child to be told about their HIV from the age of 6, aiming for most children to know about their HIV by the age of 9. Research carried out in countries accross the world has revealed that children do better when they are told at a younger age, that witholding HIV information from them can have negative impacts on their well being later. Once the child knows about having HIV it is then possible to provide support and make sure they are able to ask questions and talk about their feelings. This is very important to support their emotional well being.

We have met a lot of children who were told at a younger age. Younger children tend to take this information more in their stride, perhaps asking more questions about it later on. Generally, children take on new information more easily at a younger age. The hardest thing about living with HIV for most people is other people’s negative thoughts about HIV and the stigma that surrounds it. Younger children are less likely to be so aware of this, and so can be much more accepting of it as simply a health condition.

We have met children who were older when they were told. Some of these children have described feeling very angry that no one said anything to them sooner. They also felt scared, thinking that if no one had told them this information before then it must be really bad.

Teenage years are a time of emotional and hormonal disruption. Not telling a child with HIV until they are a teenager can cause a lot of mixed feelings and emotions as they develop their own identity, and go through puberty. As parents know, the teenage years are often not the easiest years of childhood.

Parents living with HIV

If you are thinking about telling your child that you are living with HIV, it would be useful to think about the stage in their childhood they are at. It is important to avoid major upheavals in your child’s life, such as the transition from primary to secondary school.

It may be that your children were already teenagers when you were diagnosed. You then need to think about when you are ready to tell them about your HIV status.

We know from many years of experience of working with children who live in families where someone is living with HIV, that children prefer to be told. Children want to feel they are important members of the family and that their parents trust them with family information and do not exclude them from part of it.

Children tend to work out when there are secrets being kept from them and this can be very frightening.

From our experience, many young people do find out about HIV in their family before they are told. This can make them feel scared, anxious and also angry.

We also know parents often find that sharing this private family information with their child can bring them closer together. Helping your own child to understand HIV is not only helpful for your family, but it also helps them to understand about HIV more widely and how they need to protect themselves from contracting HIV in the future.