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HIV care for children

Medical care for children with HIV is very specialised. The way HIV develops in babies and children is different to adults, especially because HIV progression can be faster in children. In addition, some of the anti-HIV drugs used to treat adults are not available for children. It’s therefore important that your child is looked after by professionals with expertise in the care, treatment and support of HIV-positive children.

In the UK, there are national standards for HIV care for children, published by the Children’s HIV Association (CHIVA). You can find out more about those standards, and other resources you might find useful, on CHIVA’s website (www.chiva.org.uk). The Paediatric European Network for treatment of AIDS (PENTA, www.penta-id.org/hiv.html) has set guidelines for HIV treatment for children, based on the best-available evidence.

In most cases, you’ll be referred to a specialist clinic at the time your child is diagnosed with HIV. Or your own HIV clinic will be able to arrange an appointment for you. You can also find a clinic by using NAM’s online e-atlas (www.aidsmap.com/e-atlas) or by calling the Terrence Higgins Trust helpline, THT Direct, on 0808 802 1221.

The name for a clinic that looks after children with HIV is a paediatric HIV clinic. But it’s likely that it will have another name that doesn’t have HIV in the title to protect the confidentiality of you and your child.

You can expect the clinic to be friendly and welcoming and its decoration and facilities will be non-threatening for children. There are likely to be pleasant activities for your child to help entertain him or her while you are waiting to be seen.

A number of specialist staff will be involved in the care of your child, working together in a team.

If you don’t live near an HIV treatment centre with a paediatric HIV clinic, your child will receive ‘shared care’. His or her regular appointments will be with a local paediatrician (children’s doctor) who has an interest in HIV. You, your child and the health professionals looking after him or her will receive advice from the nearest specialist paediatric HIV team.

HIV paediatrician: The medical care of your child will be looked after by a doctor who specialises in treating children with HIV. A doctor who specialises in children’s medical care is called a paediatrician. You’ll have regular appointments with this doctor to monitor the health of your child. It’s very important that you and your child attend these appointments as they will ensure that your child receives the right treatment and care.

Your child’s doctor will conduct physical examinations and arrange any tests. Details of the sorts of tests that may need to be done will be described later in this booklet.

The doctor will also be able to prescribe medicines to treat HIV and other infections. Details of HIV treatment for children will be described later in this booklet.

Specialist nurses: Your clinic will also have nurses looking after children with HIV. As well as looking after aspects of your child’s medical care, they’ll also be able to talk through with you other issues involved in looking after a child with HIV.

Specialist pharmacists: HIV treatment will be essential to looking after the health of your child, and to make sure it is used in the right way, your clinic will have specialist paediatric pharmacists. As your child grows, the doses of their anti-HIV drugs will need to be changed. They will make sure that the right drugs and doses are dispensed and will check for interactions with other medicines, if necessary. They will be able to provide information about how to take medicines properly.

Psychologist: As with many long-term conditions, having HIV can place stresses on the family. Your child’s clinic may have a psychologist on the team who can assess how your child is developing and give advice and support about development and play. They can also help you develop coping strategies for the whole family and support you and your child as your child learns more about their HIV diagnosis.

Social workers: Having an HIV-positive child isn’t just a medical issue. It can also have a big impact on other aspects of your life. Staff at your clinic will help you make contact with social workers or support organisations, who can answer questions you may have about issues such as housing, benefits and schooling. There’s more information in the section on sources of support later in this booklet.

The clinic may have other staff including physiotherapists and dietitians.

It is best if the HIV team looking after your child can also work with any others involved with the care of your family. This might include the healthcare team looking after any HIV-positive adults in the family, your child’s school or support organisations.

It’s important that both you and your child or children are registered with a GP, or family doctor, who will be able to look after your routine healthcare needs. Telling your GP that your child is HIV positive will help the doctor have a full picture of the child’s health, and to work with the HIV clinic, to ensure they get the best possible care. You may find other services offered by the GP surgery, such as health visitors, useful, especially when your child is very young.

You can find out more about the services GPs can offer in NAM’s booklet HIV, GPs & other primary care.

HIV & children

Published March 2015

Last reviewed March 2015

Next review March 2018

Contact NAM to find out more about the scientific research and information used to produce this booklet.

This content was checked for accuracy at the time it was written. It may have been superseded by more recent developments. NAM recommends checking whether this is the most current information when making decisions that may affect your health.
Community Consensus Statement on Access to HIV Treatment and its Use for Prevention

Together, we can make it happen

We can end HIV soon if people have equal access to HIV drugs as treatment and as PrEP, and have free choice over whether to take them.

Launched today, the Community Consensus Statement is a basic set of principles aimed at making sure that happens.

The Community Consensus Statement is a joint initiative of AVAC, EATG, MSMGF, GNP+, HIV i-Base, the International HIV/AIDS Alliance, ITPC and NAM/aidsmap
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This content was checked for accuracy at the time it was written. It may have been superseded by more recent developments. NAM recommends checking whether this is the most current information when making decisions that may affect your health.

NAM’s information is intended to support, rather than replace, consultation with a healthcare professional. Talk to your doctor or another member of your healthcare team for advice tailored to your situation.