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.