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 family routines may already have been disrupted by illness, surgery and cancer treatments.
Inheritance of a mutation is random, with a 50/50 chance of passing it on to each child. Randomness goes against our sense of fairness and feeling guilty is a normal response to uncontrollable events especially when they threaten the wellbeing of our children.
Genetic testing for a BRCA mutation will not be offered to children under 18 as there is no associated risk of childhood cancers and no preventative treatment that would be considered. Furthermore, children are not yet old enough to decide for themselves whether they want information about their lifetime cancer risks. It is also possible that by the time today’s children reach adulthood, scientists will have discovered a new treatment to correct abnormal breast cancer genes before cancer has a chance to develop.
What helps children and young people?
In most cases, children cope better when parents are 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.
Children get information from many places including the internet, social media, school 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 not 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.
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 you should tell your children why you are in hospital. This knowledge can provide the foundation for further conversations by asking children do they remember when mummy had an operation on her tummy or breast. If you are having surgery or treatment, it is important to allow your child age-appropriate participation in helping to look after you. By giving children jobs that they can do will help them feel that they are contributing.
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. Some children are more curious and others are more private.
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 sometimes these incorrect terms lead to further confusion.
It is very natural to want to reassure children but it is important to avoid premature reassurances and to validate your child’s concerns. If we push aside their fears too quickly we may make the situation appear too big and scary to talk about. We should avoid unrealistic promises as broken promises can diminish trust.
It may be helpful to remind children that everyone has mistakes in their DNA but the only difference is that we are able to find the BRCA ones.
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 that even the doctors do 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 at support groups to seek advice from other parents.
It is important that children understand that the knowledge about the BRCA mutation in their family will have many benefits for those affected, with enhanced screening, preventative surgery and treatment options. We can reassure children that research continues to look for new preventive strategies that may eliminate the need for surgery in the future generations of BRCA mutation carriers.
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. Additional support for you and your family is available from the local cancer charities and if you have concerns about your child you should speak to your doctor.