Sharing their HIV status with them
What age to tell them
If a child or young person you are parent/carer for has HIV, then Chiva has guidelines that doctors and nurses work to, and they will talk to you about this.
A child with HIV needs to know what is happening to them so they can keep themselves well and not feel scared or confused.
Research carried out in countries across the world has revealed that children do better when they are told at a younger age. National and international guidance recommends telling a child about their HIV by the age of nine.
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 wellbeing.
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.
At Chiva, 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.
It is especially important to avoid telling a child during any major upheavals in their life, such as the transition from primary to secondary school, or when they are under pressure with exams.
There is no ‘one formula’ for talking to children about HIV for the first time. Each family is different and you need to do this in a way which is comfortable for you.
You may be able to get some support from a nurse, doctor or psychologist involved in the care of your child or young person, or from a support group or a service. Or you may decide that telling your child/young person is something you want to do on your own.
Here are some things to think about before telling a child you are parent/carer for.
- If you are living with HIV try to remember how you felt when you were told your diagnosis. What were the main feelings? What did you need from other people at that time?
- Your young person may have similar feelings of fear, anger, and confusion. Try to think about how you can help them with these feelings in a similar way to how you would have liked to have been helped.
- Writing down some of the questions you think they might ask you. Questions such as, “Am I going to die?”, “Why didn’t you tell me before?” and “How did you get it?” may come up. If you plan how you will respond to these it may help.
- Choose a time and place for this first conversation carefully. You both want to be relaxed and comfortable.
- Have some information which can help you to explain HIV; this could be a leaflet, book or website.
If you do not want them to share this information with anyone outside of your family, calmly explain that this is family information. In our experience, children and young people usually understand that.
The below video includes some ideas about how you might talk to a child about HIV.