• What we would expect children to know about genes
• When is a good time to tell your children?
• What information do you give children?
• Dealing with emotions
Many parents find the prospect of talking to their children about the presence of a faulty BRCA gene within the family difficult and distressing. Studies show that parents’ first instinct is to protect their children and they find it difficult to know what and when they should tell their children.
Parents are often dealing with their own concerns about their health and future wellbeing, and can feel a sense of guilt that their children may also be at risk.
In most cases, children cope better when the family is more willing to discuss what is happening to family members. Talking to children helps them feel valued and respected and it helps them cope better rather than when they are left feeling confused and unsure how or what to ask.
What would we expect children to know about genes?
Children get information from many places including school and television and friends. They are likely to already have some knowledge about cancer and possibly about hereditary cancer. By talking to them, you can help them sort out what is accurate and what is inaccurate and clarify things they are not sure about. Children will probably be most worried about their parent developing cancer so they will need reassurance and reminders that having the BRCA gene mutation does not always result in cancer.
From the age of 8 to 11 years, children will have a very basic understanding of genetics and that they share characteristics with parents. Often children of this age cope with simple explanations in response to their questions and are not easily upset, although you may have to reassure them that having an altered BRCA gene is not the same as having cancer. Children and young people can easily confuse this so it often needs repeating throughout development into adulthood.
As young teenagers they are beginning to develop more insight about genetics, will begin to recognise that you having the gene may have implications for them but will usually cope well if you explain there is only 50% chance of them having the BRCA gene alteration.
From the age of 15 to 17 years young people start to recognise the risks to their parent, themselves and often their future children . By this age, they may be learning about BRCA and other hereditary diseases in school curricula.
Most children are quite pragmatic in response to genetic risk in families affected by inherited genetic conditions. Children and young people are often focused on developing friendships, school and their personal interests so do not dwell on the risk.
When is a good time to tell your children?
There is no ‘right’ age but try not to keep secrets. Children and young people place great emphasis on trust and honesty from parents. Children often observe changes in their parent’s behaviour and may try asking questions or may 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.
If you are having surgery it is helpful to tell your children why you are in hospital. This knowledge can provide the foundation for further conversations, by reminding children of the time when mummy had an operation on her tummy or breast.
By the age of 8 years, children learn not to ask difficult questions unless their parent(s) gives them permission because they fear upsetting them. Therefore, you may have to prompt your child, and let them know you are willing to talk with them about the BRCA gene. This applies to older children too. Sometimes a child can ask questions at inopportune moments and it may be best to tell the child that this is important and agree with your child a time when you can talk to them.
Talking about BRCA is an on-going discussion rather than a one off conversation. Like adults, children need information given to them more than once and they need time to digest information. It is important to give your child permission and the opportunity to ask further questions at a later date.
It may be easier for you and your child to have the conversation whilst doing other things together, for example, doing the dishes, driving in the car or when walking the dog.
What information do you give children?
Try to respond to children’s questions, using language appropriate to their age. Providing small amounts of information gradually is likely to help children understand and cope best. Check on the question being asked so that you find out what your child actually wants to know.
Explain and provide the name ‘BRCA gene’ - Children cope better because knowing the name allows them to discuss it with you, and this knowledge gives them a sense of control. Sometimes in an attempt to simplify things parents talk about bad blood but these incorrect terms may lead to further confusion.
It may be helpful to remind children that everyone has mistakes in their DNA but the only difference is that tests are able to find the BRCA ones.
It is important to ensure that children do not confuse carrying the gene with a diagnosis of cancer. Parents often place a positive emphasis on the importance of knowing about the BRCA gene because it means there are improved screening and perhaps treatment options. When children become adults, there may also be even better treatments available, which you can explain to your child.
It is important to recognise siblings may have different needs and parents need to find out what each one understands at different times in their development.
You may not know the answers to the questions asked and it is important to explain even the doctors to not know all the answers or that you will try to find out more information.
You may find it helpful to think through how you would explain BRCA mutations in advance and take the opportunity to seek advice from other parents.
Dealing with emotions
Talking to children about BRCA may be difficult especially if someone you love has died of cancer. The conversation may be emotionally taxing for you but sometimes it is important not to hide emotions from children. They will learn important life skills from their parents and how they deal with problems. If your child becomes upset and tearful during the conversation it does not mean that you have said the wrong thing and it is more important to allow your child to cry and give them a hug than say too much.
Often there is a great sense of relief after sharing difficult information and it is easier not to keep secrets. Some children may remain unsettled for a while and will need more reassurance. You may want to inform teachers about the situation in case children are unsettled in school and schoolwork is affected.