HIV-positive children can live a normal, and with appropriate treatment, a healthy life. However, as with HIV-positive adults, issues such as stigma, sadness, loss, illness and death may need to be dealt with.

There is no right or wrong way to approach these issues, and the chances are that your HIV clinic or local council will have a specialist social worker who is skilled at working with children and families where HIV is present. Your HIV clinic may also have other staff such as nurses, pharmacists and psychologists who can offer specialist help to HIV-positive children and their parents.

Answering questions

Giving your child information about HIV will be a process.

You’re likely to find that even very young children will want to know why they have to go to the clinic, or why they are having tests or taking medicines. You might find it useful to talk about ‘goodies’ or ‘baddies’ in the blood, or about bugs or viruses, which may enable you to truthfully talk about illness, without actually naming HIV. This can help build an understanding of health and illness.

By early adolescence, it’s important to have a full and frank discussion of HIV. This will help enable your child to feel involved and more in control of their treatment and care. Talking can also help reduce fear and anxiety, and help build a sense of independence and self-esteem.

It is also possible that your child will be asked by friends why he or she has to go to the doctors, take medicines, or has been unwell. Talking to your child about his or her illnesses, and coming up with some potential answers for questions from other children will be helpful.

By the time your child is about twelve to 13 it is generally thought best if he or she knows that they have HIV, and that they have to have tests and, if they are taking antiretroviral therapy, need to be taking medicines. You may also find that at about this time your child wants to become more involved in discussion and decisions about his or her treatment and care.

Growing up with HIV

More and more children who were infected with HIV at birth are now growing up and becoming teenagers. Some HIV clinics now have special clinics for adolescents, when medical care is gradually transferred from paediatricians (doctors who care for children) to doctors who are expert in the care of adults with HIV. These clinics are also designed to help your child adjust to living with HIV as a grown-up and will have services available to help manage the emotional and practical challenges he or she is likely to face.

Immunisations

Talk to your child’s doctor about immunisations. Although it’s generally safe to give vaccines to children with HIV, they should not be given ‘live vaccines.’ This means your child should not receive the BCG tuberculosis (TB) vaccine, or yellow fever vaccines. Children with HIV should definitely have the MMR vaccine (measles, mumps and rubella), as they need to be protected against measles which can be very serious in individuals with a damaged immune system.

Childhood illnesses

Measles and chickenpox can have very severe health implications for HIV-positive children and you should seek medical advice immediately if you think that your child has, or has been exposed to, these illnesses.

Where to go for further information

As well as NAM and the organisations and helplines listed at the back of this booklet, the following organisations provide specialist information and support that you might find useful.

Body and Soul

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 by visiting their website http://www.bodyandsoulcharity.org by calling them 020 7383 7678, or emailing info@bodyandsoulcharity.org

Childrens HIV Association (CHIVA)

This organisation of professionals is involved in the treatment and care of babies and children with HIV. Their website http://www.bhiva.org/chiva has a lot of information about HIV treatments in children and some tips on pill-taking and other day-to-day issues.

Telling people that your child has HIV

You do not have to tell anyone that your baby or child has HIV. You do not have to tell playgroup organisers, childcare workers, schools, or other parents.

If you do feel that you need to tell somebody about your child having HIV think about the reasons you want to do this. Think about how they might react, and who else they might tell.

There’s a lot of useful information about disclosing your HIV status to others in a variety in circumstances in the NAM book, Living with HIV. Free copies are available to people affected by HIV in the UK.