You’re 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. Explanations can initially be provided without having to mention HIV. This can help build up an understanding of their illness. For example:
- We went to see the doctor today because you have an illness that can sometimes make you unwell.
- 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.
As 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 from any infections.
- Your medicines are working very well, keeping the virus in your blood asleep so you don’t get sick.
- I am also taking my medicines, and my virus is asleep too; we are both doing very well together.
Most children are ready to learn about HIV at about eleven or twelve years old – around the time they go to secondary school. The information you provide should therefore mention HIV.
Think about what you need to tell your child. They don’t need to have lots of detail about HIV or know everything straight away. Giving too much information may only complicate things for them and make them confused and worried.
If 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.
Talking 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.
Be prepared to answers questions. The questions you might be asked include:
- How did I get it?
- How long will I live?
- Am I going to die?
- What will happen to me?
- Do you have HIV as well?
- How did you get HIV?
- Can I give it to someone else?
- Can I tell my friends I have it?
- Will the HIV ever go away?
You 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.
It’s a good idea to think about answers. Try practising a roleplay in your mind or with someone you can trust, where you can act out the scene when you tell your child about HIV. Try to think about some of the questions they might ask you: 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 happen.
Many parents find it very difficult to name HIV to their child. Your clinic team can help you with doing this for the first time, and support you and your child afterwards in dealing with this new knowledge. For children who are well, and have learnt the story bit by bit over the years, this process is often not as worrying or problematic for the child as parents fear.
Many parents fear that their children will then tell others that they have HIV. You can be reassured that children rarely do this: they almost always feel that this information should be kept private. 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.
Older 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. They may have, or can refer you to, health advisers whose job it is to advise about preventing HIV and other sexually transmitted infections.
Many parents fear that their child will be very angry that they have been ‘given’ HIV. Again this is a very rare reaction: most children and parents actually get closer together, and feel more strongly connected in trying to support each other with their condition.
Many parents want to put off telling their child about HIV. Young people who have been born with HIV have told us that they think the best time to know about the virus is between ten and twelve years. Those who found out later than this often feel quite angry that important information about their body and their health was not shared with them, and this did not help their relationships with their parents.
- Many children with HIV cope extremely well with the knowledge that they are HIV positive.
- 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 understood it.
- Let them know that you are there to support them – this will help them feel that HIV is something they can cope with in the future.
- Speak to staff at your child’s clinic – find out if there is someone like a nurse, health adviser, social worker or psychologist they 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.
Talking to your child about your own or other family members’ HIV
If you, or other members of your family, are HIV-positive as well, then this is something that you’ll eventually need to discuss with your child.
Although it will be probably upset them to learn that someone close to them has an illness, knowing could build a greater understanding of events that they may actually already be aware of to some degree and give a sense of involvement and control.
When you tell them, offer reassurance but do not lie to them. Help them feel prepared for the fact that they might witness you or someone else falling ill and consider telling them how they can help (e.g. you may want to let them know when you have to take your tablets).
Some parents find it helpful to write down a list of instructions of what people in the family should do if you or someone else falls ill. Although this may be uncomfortable to do, many children are glad to know they can be of help and this reduces fear and anxiety. The instructions may include:
- Details of the HIV clinic and names of doctors
- The name of the family GP
- How to use 999 emergency services in case an ambulance is needed
- The names and telephone numbers of friends or relatives who can help.
The instructions should be kept somewhere safe where they can be found easily. Even though they may not be needed, having the instructions available can help everyone who knows about HIV in the family feel less worried and give them a sense of control. And they can be useful in all sorts of situations – not just those to do with HIV.