This article is a general guide for parents or carers of children and young people (up to age 18) who are at risk of, or have been diagnosed with autosomal dominant polycystic kidney disease (ADPKD). It contains advice and tips to help you explain ADPKD to children and young people.
It does not cover the medical aspects of ADPKD in children and young people, how it is diagnosed and monitored, symptoms and complications, and how the disease might progress.
If your child is the first person in your family to have ADPKD, which happens in around 1 in 10 people, you may find it helpful to read more about ADPKD from other information on the PKD Charity website or contact the PKD Charity helpline (0300 111 1234)
Many parents find the prospect of talking to their child (or children) about ADPKD difficult and distressing. Your first instinct is likely to be to protect your child from knowing about ADPKD and its risks. If you also have ADPKD, you may find it difficult to know what and when you should tell your child.
It is likely you’re dealing with your own concerns about your health and future wellbeing. It’s not unusual to feel a sense of guilt that your children are at risk from carrying a gene that causes ADPKD. But remember, no one is responsible for the genes they inherit or pass on to their children.
In most cases, children cope better when their family is more willing to discuss what is happening to different family members. Talking to children helps them feel valued and respected. It helps them cope better than when they are left feeling confused and unsure how or what to ask.
Children get information from many places including school, television, friends and the Internet. By talking to them you can help them understand what is happening in the family and be clear on the facts. You can clarify things they are not sure about.
Children are likely to already have some knowledge about genes and how diseases can be inherited. However, this will vary according to their age and development.
Children will probably be more worried about their parent with ADPKD, and what will happen to that parent, than their own health. In some cases, children will need reassurance and reminders that having a faulty gene that causes ADPKD does not always result in the disease occurring in the same way as for other family members who have ADPKD.
You may have to explain things several times. It can sometimes take children several explanations before they begin to understand, even though they may have asked the same questions previously. Similar to adults, children need time to process information and think it through.
You can provide reassurance that knowing you carry a gene that causes ADPKD means that you can monitor your health and have tests. This means that – if the disease arises – it can be detected very early on and suitable treatments started to control symptoms.
Younger children do not have experience to recognise and anticipate the fuller implications of situations. Therefore, your child will have a gradual realisation of the implications of your ADPKD if you talk to them as they grow up. Finding out about ADPKD for the first time when older can be a shock to young people. They can ask difficult questions, yet not be emotionally prepared for the answers.
There is no ‘right’ age, but try not to keep too much information back from your child. Children place great emphasis on trust and honesty from parents. They often observe changes in their parents’ behaviour and may try asking questions or be waiting for you to discuss what is happening. Watch for any changes in your child’s behaviour – it may indicate that they are worried or concerned about what they have observed or overheard.
By the age of 8 years, children learn not to ask difficult questions unless you give them permission, because they fear upsetting you. Therefore you may have to prompt your child, and let them know you’re willing to talk with them about what is happening in the family and with your (or their) ADPKD. This applies to older children too.
Below age 8: Your child is not likely to have a basic understanding of inheritance yet. However, if there is information your child wishes to know about ADPKD, you may want to give simple explanations from age 2 onwards. For example, if your child asks what a scar is or why you had to go to hospital, you could explain that you had poorly kidneys and the hospital helps make them better. This may help your child to feel encouraged to ask questions in the future.
8–11 years: Your child is likely to have a very basic understanding of inheritance. They may know that they share characteristics with their parents. They may talk about genes but not fully understand what they are. Often children of this age cope with simple explanations in response to their questions and are not easily upset. However, you may have to reassure them that having the ADPKD gene is not always the same as having the disease. Children and young people can easily confuse this, so it often needs repeating throughout development into adulthood.
12–14 years: Your child is beginning to develop more insight about inheritance. Young people will begin to recognise that you having the gene may have implications for them. They will usually cope well if you explain there is a 50% chance of them carrying a gene fault (mutation).
15–17 years: Your child is likely to recognise the risks to you, themselves and often their future children. They can begin to consider screening if they have not been diagnosed. By this age, young people will be learning about hereditary diseases in school.
Most children are quite pragmatic in response to learning about genetic risk in families affected by inherited genetic conditions, and the genetic condition itself. Children and young people are often focused on living their lives, developing friendships, schoolwork and their personal interests, so do not dwell on the disease or its risks.
Try to respond to your child’s questions, using language appropriate to his or her age. Providing small amounts of information gradually is likely to help them understand and cope best. Check on the question being asked, so that you find out what your child actually wants to know.
You may find it helpful to look through the PKD Charity website for information on ADPKD that you could use as a basis for your conversation. You may need to reword or simplify information for your child. For young children, you may wish to use props, such as a teddy, to help explain where the kidneys are, for example.
Children cope better when given a disease name. Naming the disease takes some of the fear away, especially if they see you struggling with symptoms, it gives them a sense of control. It also allows them to discuss the disease more easily with you. You can place a positive emphasis on the importance of knowing about ADPKD, because it means there will be improved screening and perhaps treatment options available to your child when they grow up. When children become adults, there may also be even better treatments available, which you can explain to your child.
The following points have helped some parents to talk to their children:
It might be worth considering the following benefits and drawbacks when preparing to talk to your child.
Written by: Alison Metcalfe, Professor of Health Care Research & Dean for Research, King’s College London, Gill Plumridge, University of Birmingham.
With thanks to all those affected by ADPKD who contributed to this publication.
Contact us for the version of this factsheet with scientific references.
IS Ref No: ADPKD.TAATC.V1.0
© PKD Charity 2015
First published October 2015
Due to be medically reviewed October 2018
Disclaimer: This information is primarily for people in the UK. We have made every effort to ensure that the information we provide is correct and up to date. However, it is not a substitute for professional medical advice or a medical examination. We do not promote or recommend any treatment. We do not accept liability for any errors or omissions. Medical information, the law and government regulations change rapidly, so always consult your GP, pharmacist or other medical professional if you have any concerns or before starting any new treatment.
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The PKD Charity Helpline offers confidential support and information to anyone affected by PKD, including family, friends, carers, newly diagnosed or those who have lived with the condition for many years.