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

What to Tell an Older Child?

When a child is seen as being able to agree themselves to being tested, the law says that child needs to know what they are being tested for and why.  As with adults, they need full information to make their decision of whether or not to be tested. Therefore the best thing is that the child knows you have HIV and this is why the doctor or nurse wants to do a test. You can visit the talking area of this site, which will help you think about how to talk to your child about this.

There are lots of reasons for why telling your child about living with HIV is a good thing. Sometimes needing to have a child tested can be a prompt for parents to talk about their HIV status to their child, which might be something they have been putting off or waiting until the “right time.”

If you feel you really aren’t ready to tell your child about your HIV, they still need to be tested. This makes things more complicated, but not impossible. Even though your child must be tested, you still have the right under the law to have your medical confidentiality upheld – this means no one should tell your child you have HIV. But you also need to remember that health professionals are not going to lie to your child and you cannot ask them to do this.

You also need to prepare what you are going to say to the child if the test comes back positive, as then they will need to know they have HIV and how they got it. Planning everything in advance is the best way, so you can support your child. Look at planning to talk about HIV to help you prepare.

Some things you may tell the child about the test

Here are some examples of what older children have been told they are being tested for without directly saying that their mother has HIV:

The child is told they need a general health check. General health issues are discussed and the doctor asks for consent to do a blood test for infections such as hepatitis and HIV.

If the child was born abroad, the doctor would like to test them for different blood borne viruses which are more common where they were born, such as hepatitis B which can affect your liver; HIV, which can be treated if we know you have it; and a full blood count (to see if they are anaemic).

You should also remember that you are not in this alone.
Your health team will help you think about these things and work out what you can say and when. You may have a support worker or a social worker that you can also talk to about this, or perhaps another parent who has already had their child tested.