Telling children about a genetic condition

Many parents find it very difficult and, at times, emotionally painful, to talk to their child about a genetic diagnosis of a primary immunodeficiency (PID). We understand how hard this can be and we have put together some tips to help you.

Why tell your child about the genetic condition

Research shows that children who know about their genetic diagnosis often cope better emotionally.
Children report generally positive feelings about being told about the genetic condition.
There is little evidence that any emotional damage results from telling a child about a genetic diagnosis.
If the genetic diagnosis has been a family secret, this puts the child in a difficult position.
Openness about a genetic condition in the family increases children’s coping, improves their attitude towards the condition, reduces stress and results in fewer psychological issues long-term.
Children naturally look for the positives and rarely let a condition become a central focus in their lives.

When to tell a child

There is no perfect age, but family experiences and current research suggest it is best for children to learn about a genetic condition gradually throughout childhood.
Receiving this kind of information as younger children is less shocking.
Not informing children until they are approaching adulthood can affect their coping, self-esteem, identity, reproductive decision-making and family cohesion.

How to tell a child

Keep it simple.
Give small amounts of information at a time.
Take into account their age and individual developmental stage.
Go at the child’s pace – learning about a genetic diagnosis and becoming aware of the implications is a process that takes time.
Check their understanding and correct any misperceptions as you go along.
Make the conversations informal, discuss the genetic condition while doing something else with your child, for example, when driving somewhere in the car, when cooking a meal together or playing a game.
Where possible answer your child’s questions as they arise.
You don’t have to have all the answers, you can learn together with your child.
Ensure there is opportunity for continued discussion.
Rather than focussing on the genetic test and the best time to carry it out, focus on family coping and coming to terms with genetic information.
Young people have said they find it beneficial to meet with a healthcare professional, such as a genetic counsellor, to discuss the genetic diagnosis and the implications for them. You can request a referral for genetic counselling from your GP.
It is helpful to encourage and support young people to make their own decisions about treatments, genetic testing and care provision. This appears to encourage young people to discuss information and their thoughts about the genetic condition with their parents and usually to follow their parents’ advice.