When a child begins to show greater understanding of HIV, they need to start making their own healthcare decisions. The healthcare team will expect to start letting them have a say. 

The teenage years could be a time when a young person living with HIV seeks greater control over their healthcare. Doctors will want to see your young person on their own at clinic appointments as this is an important way to help them develop confidence in managing their own health. 

Your young person may not tell you what was discussed at their clinic appointments. This may make you feel uncomfortable, but it is important to remember that they need to learn to manage HIV in order to have a long, healthy life. 

Young people with health conditions often stop taking their medication for periods of time, or may take it sporadically. For young people living with HIV this can be down to different reasons, for example:

  • They may forget to take their medication as their social life becomes more important to them and they are out of the house more.
  • Not taking medication can make some young people feel they have control over HIV.
  • Taking medication every day can for some people be a constant reminder of HIV. A way to avoid facing this is to stop the medication which then stops the HIV reminder.

The most important thing you can do is make sure your young person feels that you are available and that you listen to them when they talk to you. If you can show them some understanding of their feelings, you may be able to find out what will help them and you can then support them to work through this stage. 

Getting angry with them or lecturing them will not help, but if you also live with HIV, sharing your experiences might. 

If you are worried about a young person’s medication adherence, you could talk to their healthcare team. They will know if your young person is taking their HIV medication from their blood tests and they may be able to work out a way that you can be kept informed.