Young people undergo a lot of changes as they grow up and approach adulthood. They will start to have more idea of who they are and develop their identity.  

This stage can be very challenging if you are a parent or carer of a young person living with HIV. For example, they may want more freedom to make decisions about their lives than you would like them to. Probably the most important thing to remember is that this period of time is a transition from child to adult, meaning they (and you!) will come out the other side.

Healthcare

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. 

Medication

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 you are available and willing to listen. 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 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.

Take a look at our resources on medication, including tips on how to remember to take it.

Transitioning from paediatrics to an adult clinic

If you are a parent or carer of a young person living with HIV, it can be an anxious time when they move from paediatrics to adult care. 

When change happens, we can sometimes feel “lost”. However, in the UK, young people living with HIV have several options to help make this transition more manageable:

  • While in paediatric care, your young person will have opportunities to discuss what an adult clinic would look like. 
  • It may be possible to transition from paediatric care to a youth clinic, if one is available in your area.
  • You may be able to split the clinic appointment between paediatric and adult clinic until they are comfortable to make the full transition.
  • You can access peer support, including a peer mentor attending adult clinic visits with the young person, to help with transition.

Talking about sex

Talking to a child about sex can be difficult for most parents and carers, but it’s important children are informed – both on a physical and emotional level – and they need accurate information before puberty.

We’ve found that parents and carers are happier to talk about sex (or HIV) when they feel prepared and know what to say. 

Remember, this is not about expecting a young person to start having sex, but helping them prepare well for when they do. Research shows that these early conversations lead to young people having sex later, not earlier.

YOUNGER CHILDREN

If you are a parent or carer of a child living with HIV, talking about sex with them at a young age means you are creating a safe space with them where you can talk about ‘private’ or ‘family’ issues and where they can ask questions. This can really help you when you later decide to talk to them about HIV.

Ideally, this should be an ongoing conversation, and in some ways the earlier you start, the easier it will be.

When you are talking to young children about sex, do it in a really simple way so they understand where ‘babies come from’. You can talk about this being part of a loving relationship. Always use correct scientific words.

OLDER CHILDREN

Young people will probably be equally embarrassed to be talking about sex as you are.

But if you started talking to them about sex when they were younger, it will be easier. It is best to do this when you are both relaxed. It helps to not be face-to-face, so walking somewhere, on a car journey, or doing something like cooking are good times to talk. But make sure it’s a private space.

These conversations could be about sex, puberty, and how it feels to be a young person with changing hormones and bodies and having more intense feelings.

Schools cover puberty and what happens to the body during this time, but as a parent or carer it’s important that you explain this to them as well. This will also make it easier to talk to them about HIV.

It’s important that young people living with HIV understand that there are only a few ways HIV can be passed between people, including having sex without a condom.

They also need to understand that a person living with HIV who is taking antiretroviral therapy (ART) may have an ‘undetectable HIV viral load’. This means they still have HIV but ART has reduced the amount of HIV in their blood to such low quantities that there is zero risk of transmitting the virus to sexual partners.

The phrase U=U (undetectable = untransmittable) is now widely used.

Online resources

There are many books, leaflets and websites available to help parents and carers talk to young people about sex, puberty, and relationships. Some good sources are:

  • The Family Planning Association where you can buy resources that you can help you talk to your young person about sex.
  • Brook has a website about sex aimed specifically at young people; this is a good place to get more information.  
  • NHS Live Well has sections on talking to children and young people about sex.

There are many places online where you can read about other parent and carer’s experiences with young people and forums where you can post your own comments or questions, such as Family Lives.  

Have a look around and find the resources you like and feel comfortable with.