When should I tell my child he/she has HIV?

When should I tell my child he/she has HIV?

You’ll need to be the judge of this and consider both the child’s and your own circumstances and needs.

But by the age of ten, you might find that your child asks more questions about their health and treatment and wants to become more involved in their treatment decisions. This might happen sooner for some children, and later for others.

Telling people your child has HIV

You don’t have to tell anybody that you or your child has HIV. But, being realistic, you’ll have to let doctors and other healthcare staff know so that you can get the best treatment for yourself and your child.

It’s important to think about who else you might want to know. And think what their reaction might be.

If you don’t want to mention HIV you could use a term such as 'chronic viral illness'. But some people might ask questions about the nature of this illness.

It is possible, even likely, that you or your child will be asked by friends about visits to the doctor, illness or the reason why medicines are taken. Try and think of some answers in advance.

Specialist care

HIV treatment and care for children is often provided at specialist children’s HIV clinics. These are sometimes called paediatric HIV clinics. The doctors, nurses, pharmacists and other healthcare staff at these clinics are very skilled at providing HIV treatment and care to children.

HIV treatment works well in children. Many children who were born with HIV are now becoming teenagers. Some HIV treatment centres now provide special clinics for teenagers. These clinics provide an opportunity to transfer care from paediatric doctors to doctors who are expert in the care of HIV in adults.

They also give teenagers a chance to come to terms with living with HIV as an adult. Counsellors might be available to help your child talk about their feelings.

Taking HIV treatment

HIV treatment needs to be taken correctly to work. It is possible that your child might find this difficult at times. The type of difficulties might change as your child gets older.

For babies and infants a small tube can be fitted into the stomach into which you can directly inject medicines.

Many anti-HIV drugs come in a liquid or syrup for children. Such liquids might be easier to take than pills, but they often have an unpleasant or unusual taste. Giving your child a sweet after they have taken their medicine might be a way of getting around this.

Try and be honest with your child. Explain that it is important to take medicines regularly. You can do this without mentioning HIV.

As your child gets older you can involve him or her in their adherence. For example, you might provide encouragements to keep a diary that records when pills are taken.

Or you could try to make taking medicines fun – try and think of a way of turning it into a game.

Taking treatment in front of friends or at school might lead to questions. And if your child is away from home it can be difficult to make sure that they take their medicines properly.

Help and support

It is likely that your HIV clinic or local council will have a social worker who is experienced in working with families and HIV-positive children.

You can find your local HIV clinic by searching in the organisations section of NAM’s website, aidsmap.com.

As well as having specialist doctors, children’s HIV clinics will have nurses, pharmacists, counsellors and psychologists who can help HIV-positive children and their families.

There’s a national charity in the UK that provides support to families, children and teenagers affected by HIV. It’s called Body and Soul and they can be contacted on 020 7383 7678. Their website is www.bodyandsoulcharity.org.

Specialist HIV doctors have their own organisation called the Children’s HIV Association (CHIVA). Their website is http://www.chiva.org.uk/ and it has a lot of useful information on HIV treatment for children and issues such as taking medicines and day-to-day life with HIV.