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Talking to your child about HIV

Giving your child information about HIV will be a process. What you say will depend on the child’s age, their level of understanding, and their readiness to know.

It’s important to think about how and when you’ll give your child information about either their own and/or your HIV infection. It’s important that you use language your child will understand. Be honest and consistent. Hiding the truth can mean that you will encounter problems later.

The healthcare team – including the doctors, nurses and psychologist – at your child’s clinic will be able to help you talk to your child about HIV and illness.

Other parents and carers of children with HIV may also be able to share their experiences with you. It’s a good idea to prepare yourself for possible reactions and have some support lined up to turn to if you need to. Ask the team at your child’s clinic to recommend or refer you to HIV support organisations or peer support services, or see Where to go for information, help and support. There are resources produced by the organisation Body & Soul to help parents and carers talk to children about HIV (see http://bodyandsoulcharity.org/children/base-10-12-years/talking-to-our-children-about-hiv/#s1).

Providing information as your child grows up

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. You and your child’s healthcare team will have conversations about how and when HIV should be discussed openly with your child.

If 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 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.
  • 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 too, and my virus is asleep too, we are both doing very well together.

Most 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 HIV.

Think 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 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. Try to provide regular opportunities for conversations, as children’s questions or concerns are likely to change over time.

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, 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.

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. 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.

Sometimes 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.

Many 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.

Parents 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.

You 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 children.

So remember:

  • 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 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.

There 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 and http://www.ncb.org.uk/hiv/resources-for-young-people/your-life-and-their-life-leaflets), as well as a leaflet for parents and carers of young people with HIV.

The 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.

The 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).

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, 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 they 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
  • 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.

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.