If your child has ADPKD, you may find it difficult to know what information to give them, especially if you feel it worries them. Likewise, if you or another family member has ADPKD, talking to your child (or children) about the condition might be stressful.

Children usually want information first from their parents or guardians.

Conversations can help children and young people to:

• cope and feel less confused
• feel valued and respected
• get accurate information
• feel able to ask questions
• be confident talking with others

Talking with children as they grow up allows them to gradually understand ADPKD and what it means for them and their family. In general, children cope well with new information and don’t dwell on the risk of disease. They’re focussed on living their lives, friendships, school and personal interests.

Finding out about ADPKD later can be more of a shock. Young people may ask difficult questions but not be emotionally prepared for the answers.

If you want to talk with your child about ADPKD, the tips below may help you prepare.

• Look for natural opportunities to talk, for example after a TV programme or school lesson about health or kidneys.
• Watch out for changes in behaviour that might suggest your child is worried about something they have seen or heard. It might be time to talk.
• Prompt your child to ask questions. By age 8, children may hold back from asking questions for fear of upsetting their parents. Let them know it’s okay to ask.
• Keep it informal. Children and young people often prefer to chat while in the car or cooking, for example.
• Prepare emotionally. Talking about ADPKD can be hard on adults. Choose a time when you’re ready and calm.

• Check you understand what your child is asking.
• Use simple words they can understand.
• Provide small amounts of information at a time.
• Be ready to explain things several times. Children might not understand first time round. Like adults, they need time to digest information.
• Give the condition a name: ADPKD, PKD, or kidney cysts. This reduces fear and gives control.
• Talk about emotions. Reassure your child that they’re not alone in how they feel. Share how you’re feeling too.
• Listen.
• Don’t avoid answering a question. Children like trust and honesty.
• Check that you’ve answered your child’s questions. If you cannot answer, explain why. Give the answer later if you can.

• Your child might need time. After getting new information, their schoolwork may be affected for a short time.
• Encourage future chats. Just like adults, children take time to process information and may have questions later.
• Be prepared for future questions. If these come up at tricky moments, agree a good time to chat later.

There is no ‘right age’ to talk. Children learn at different speeds. You can begin to talk about ADPKD from when your child is 2 years old. Below we give some suggestions about suitable topics and phrases by age group.

Choose words to suit your child’s age. For example, ‘PKD’ is an easier term for younger children to remember, whereas older children might want to get used to the full term ‘ADPKD’.

You’ll need to address issues specific to your family as they arise. For example, if a family member is soon to have a kidney transplant, you could explain why it’s needed, recovery times, and any changes to childcare.

Aged 7 or younger

Children this age often understand short-term illnesses (for example, having a cold).

You could talk about:

• What kidneys are: “You have two kidneys inside you. Each is the size of your closed hand. They clean your blood and make pee with the water you don’t need.”
• Having a kidney condition: “My kidneys are poorly.”
• Trips to hospital: “I need to go to the hospital sometimes so doctors can help my kidneys feel a bit better.”
• Reassurance: “It’s not your fault that I’m sad today.”

Age 8 to 11

Children this age often understand longer term illness and the idea that you can inherit features from a parent.

You could talk about:

• What PKD is: “I have a kidney problem. My kidneys have lots of balls of fluid in them called cysts. This means my kidneys don’t work as well as usual. I was born with this problem. It’s called PKD.”
• Genes control how your body is made and how it grows. Sometimes the genes for kidneys can cause cysts to grow. These cysts can stop the kidneys from working well.
• How PKD is inherited: “I have PKD because I inherited a gene that causes the condition from grandpa.”

Age 12 to 14

Children this age often understand genes and inheritance.

You could talk about:

• The chance of your child having ADPKD: “Because I have ADPKD, there’s a chance you could have it too.”
• Why one child has ADPKD and the other doesn’t: “You and your brother/sister have many different genes. You have PKD because you inherited a gene that causes the condition from me/your mum/your dad. Your brother/sister doesn’t have the same gene.”
• The age that ADPKD causes symptoms: “Most people with ADPKD are about 30 or 40 years old when their kidneys stop working so well. The age at which problems begin differs between people.”
• Having checkups: “I go to hospital once a year to check how well my kidneys are working.”
• Treatments: “No treatments can cure ADPKD. Lots of treatments can help with the problems it causes though. For example, when I had a kidney infection, I took antibiotics and that got rid of the infection.”

Age 15 to 17

Children this age often understand how inherited conditions might affect them and their future children.

You could talk about:

• The chance your child has ADPKD: “Because I have ADPKD, there’s a chance you have it too. It’s a 1 in 2 chance (50%).”
• Why one child has ADPKD and the other doesn’t: “About half of your genes are different to your brother’s/sister’s. You inherited a gene that causes ADPKD from me/your mum/your dad. Your brother/sister doesn’t have ADPKD because they inherited a different gene from me/your mum/your dad.”
• Tests for ADPKD: “You could be tested to see if you have ADPKD. A doctor could check your kidneys using a scan or could do a blood test to look for the PKD gene.”
• Deciding whether to be tested: “Would you like to know whether you have ADPKD? You can talk to me or a specialist about the good and bad sides to testing whenever you feel ready.”
• Check-ups: “If you have ADPKD, you probably won’t get any problems until you’re much older. Every year or two, doctors can do simple tests to check your kidneys are doing ok.”

Videos are a great way to help children take in new information in a relaxed way.

Check any video before playing it to your child:

• Is it aimed at their age group?
• Is the topic right?
• Does the information seem accurate?
• Is anything shown or said that could cause worry?

Here are some suggestions of videos that introduce how the kidneys work:

• Young children: Nemours KidsHealth’s cartoon “How the urinary system works”.
• 8–12-year-olds: Operation Ouch’s video “What are the kidneys?”.
• Teenagers and young people: TedEd’s video “How do your kidneys work?”.

You may find it helpful to talk to other family members, friends and health professionals about how to talk with children about health problems. Chatting to other parents through our face-to-face and online support groups and Facebook groups might be useful too.

You may want to chat to the school at times you think your child could be worried about their own or a relative’s health. This means teachers can be mindful and ready to give support.

The Genetic Alliance UK also has a team to answer questions about inherited conditions. Call 0300 124 0441 or email [email protected] to get in touch.

• ADPKD basics
• Symptoms and testing in children
• Genetic counselling and genetic testing for ADPKD
• Support from the PKD Charity