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Children
This factsheet provides an introduction to some of the practical issues which you may need to consider if you are the parent or carer of an HIV-positive child.
Answering questions
Providing your child with information about HIV, whether it’s in relation to your own and their health will be a process.
You're likely to find that even very young children will want to know why you, or they, have to see a doctor, go to a clinic, or take medicines.
Talking about 'goodies' or 'baddies' in the blood, or about bugs or viruses might allow you to talk truthfully and build an understanding of health and illness, without actually mentioning HIV.
It's possible, even likely, that your child will be asked by friends why he or she needs to take medicines, go to the hospital all the time, or has been unwell. Talking you your child about his or her HIV, and coming up with some potential answers to awkward questions will be helpful.
By the time your child is about ten it is generally agreed that it is best that he or she knows that they have HIV, that they need to have blood and other tests to monitor it, and if they are taking anti-HIV drugs, that they need to take these to control HIV. At this age you may also find that your child wants to become more involved in discussions and decisions about their treatment and care.
Disclosure
You don't have to tell anybody that you or your child has HIV, but there may be circumstances where you need to disclose information about your child's or your own health status.
It's important to think about who you want or need to tell, and think about what their reaction might be. If you don't want to mention HIV you could use a term such as "chronic viral illness."
Growing up with HIV
HIV care for children is provided at special paediatric clinics.
Thanks to the success of anti-HIV treatment, more and more children who were infected with HIV at birth are now becoming teenagers. Some HIV clinics have special clinics for adolescents, when medical care is transferred from paeditricians to doctors who are expert in the care of adults. These clinics are also designed to help your child adjust to living with HIV as a grown-up and will have services to help manage the emotional and practical changes he or she is likely to face.
Adherence in children
Anti-HIV drugs need to be taken very rigorously to work by both adults and children.
There's no single adherence tip that will work for all children, instead there may be some strategies that are particularly useful depending on the age of your child.
Most anti-HIV drugs come in special liquid formulations for children. Even so, unpleasant taste can be a problem. One way around this could be to use a syringe, without a needle, to get medicine into your child's throat without touching their tongue. Also, try giving your child a sweet after taking medication to take away the taste.
Explain to your child why it's important to take medicines, you don't have to mention HIV. As your child gets older, make sure that they are actively involved in adherence, for example, by keeping their own adherence schedule.
Try and make taking the medicines a game.
Once-daily treatment might also help boost levels of adherence.
Problems with adherence can change with time. For example your child might want to go on school trips or stay overnight at a friend's house. Making sure that your child takes their medication at these times could be very difficult. You might know of an adult who you can trust to ensure that your child takes their medication, but this may well entail disclosing your child's or your own HIV status.
For babies and small children it is possible to fit a special tube into the stomach into which medicines can be directly injected.
Getting help
The chances are that your HIV clinic or local council will have a social worker who is skilled at working with children and families where HIV is present.
Your HIV clinic is also likely to have other staff, including nurses, pharmacists and psychologists who can offer specialist help to HIV-positive children and their families.
Body and Soul is a UK charity providing support and services to families, children and teenagers living with or affected by HIV. You can find out more about their services by calling 020 7383 7678.
The Childrens' HIV Associaiton (CHIVA) is an organisation for professionals involved in the treatment and care of babies and children with HIV. Their website, www.bhiva.org/chiva has lots of useful information on taking medicine and the day-to-day issues involved in living with HIV.