likely to find that even very young children will want to know why they have to
go to the clinic, have tests or take medicines. You and your child’s healthcare
team will have conversations about how and when HIV should be discussed openly
with your child.
your child doesn’t yet know they have HIV, you can still help them understand
their health with explanations such as:
- We went to see the
doctor today because you have an illness that can sometimes make you
- The doctor and
nurse wanted to see how you are doing.
- The medicines you
need to take can help you get better and/or stay well.
your child gets older, you’ll need to provide more information. For example,
you might want to say something like:
- The reason you
need to go to the clinic is because something in your blood isn’t working
as well as it should do.
- The tests you have
look at your blood and what we learn from them helps us to keep you well.
- You take medicines
to make sure that your blood is working properly and this can stop you
from getting ill.
- Your medicines are
working very well, keeping your white blood fighter cells very strong so
you don’t get sick.
- Your medicines are
working very well, keeping the virus in your blood asleep so you don’t get
- I am also taking
my medicines too, and my virus is asleep too, we are both doing very well
children are ready to have open conversations about HIV while they are at
primary school. Generally, they should know they have HIV by the time they go
to secondary school. The information you provide at this point should mention
about what you need to tell your child. They don’t need to have lots of detail
about HIV or know all about the disease straightaway. Giving too much
information may only complicate things for them and make them confused and
your child starts asking questions about why they need to take medication or go
to hospital, you should provide an explanation of why monitoring needs to
happen and why treatment is important. For example:
- You were born with
a virus in your blood called HIV.
- You go to the
clinic to see how HIV is affecting your health.
- The medicines you
take stop HIV from damaging your body and keep you well.
to your child may be difficult or even painful for you. But it can help your
child to feel involved and give them a sense of control over their treatment
and care. It can also help build a sense of independence and help reduce fear
and anxiety. Try to provide regular opportunities for conversations, as
children’s questions or concerns are likely to change over time.
prepared to answers questions. The questions you might be asked include:
- How did I get it?
- How long will I
- Am I going to die?
- What will happen
- Do you have HIV as
- How did you get
- Can I give it to
- Can I tell my
friends I have it?
- Will the HIV ever
can probably think of lots of other questions that your child might ask. The
questions will vary depending on how old your child is and how much they
understand, and whether anyone in the family has died of HIV-related causes. Some
of these questions might be awkward, difficult or embarrassing, but if you have
thought about what they are, you can feel prepared if and when they arise.
children may have worries that they feel uncomfortable talking to their parents
about. For example, they might want to know about how not to spread the virus
to boyfriends or girlfriends. Talking about safer sex and using condoms can be
uncomfortable for lots of parents as well. Don’t be afraid of asking your
clinic for help with this. Staff there can offer advice to you and your child
about keeping themselves and other people safe from sexually transmitted
infections. As your child gets older, he or she will be offered time on their
own with a nurse and doctor in the clinic to discuss these issues.
parents find it very difficult to start talking openly about HIV, naming it to their
child. Your clinic team can help you with doing this for the first time, and
support you and your child as your child’s knowledge about HIV develops.
parents fear that their children will then tell others that they have HIV. You
can be reassured that children rarely do this, when they are supported by their
family and healthcare team to explore why certain information is private and
who needs to know. If your child does want to tell someone, you need to help
them think carefully about this (see Telling
other people that your child has HIV). This may become more of
an issue as your child gets older.
may fear that their child will be angry that they have been “given” HIV. This
reaction is rare and, in the long term, helping your child manage the emotional
impact of HIV through open, supportive conversations will help reduce any
feelings of anger. Most children and parents actually become closer, and feel
more strongly connected in trying to support each other in living with HIV.
may be tempted to put off telling your child about HIV. Young people who have
been born with HIV have generally been told the name of their diagnosis by the
time they start secondary school, though open conversations about HIV with
children of a younger age are now recommended. Children who find out later (when
they are already in their teens,) can feel quite angry that important
information about their body and their health was not shared with them, and
this doesn’t help relationships with parents. The organisation Body & Soul
runs a group for children aged between 10 and 12 years who are aware of how HIV
affects their lives. You can find out more about BaSe at http://bodyandsoulcharity.org/children/base-10-12-years/#s2.
The service can also offer face-to-face or phone support around naming HIV to
- Many children with
HIV cope extremely well with the knowledge that they are HIV
- Take things
slowly. Keep messages about your child’s condition and treatment simple so
that they can remember instructions easily.
- Write things down
if you think it will help them.
- Encourage them to
ask questions – if you give them any leaflets or booklets to read, make
time to ask them what they think about the information and whether they
- Let them know that
you are there to support them – this will help them feel that HIV is
something they can talk about and cope with in the future.
- Speak to staff at
your child’s clinic or an HIV support organisation – find out if there is
someone your child can call if they need to ask a question or if they
would like to talk to someone outside the family.
- If your child asks
you questions that you are struggling to answer, you can also call their
clinic for advice. Staff at the clinic will help you prepare and will be
able to talk to your child and provide more information if needed.
are resources available to help with the process of telling your child about
HIV. The CHIVA website has resources produced by a number of organisations with
information about HIV for children of various ages (see www.chiva.org.uk). The National Children’s
Bureau has produced a series of leaflets and a website, aimed at young people
aged from about 15 to 25 (see http://ncb.org.uk/lifelinks
as well as a leaflet for parents and carers of young people with HIV.
website Getting to know you is a
resource designed to help parents tell children about HIV. You can read more
about it at http://www.chiva.org.uk/parents/helpingtellwebsite.html.
organisation Body & Soul produces resources for teenagers (see http://bodyandsoulcharity.org/teens/),
and for parents and carers of younger children (see http://bodyandsoulcharity.org/children/#s1).
It also produces interactive HIV information resources for people of all ages,
starting from younger children (see http://bodyandsoulcharity.org/the-factory/),
including games and quizzes; there are also three short animations describing
HIV, transmission and treatment (see http://bodyandsoulcharity.org/the-factory/films/#s1).