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The announcement of a diagnosis of a chronic disease is always difficult, even more when it concerns a child. How can we make sure that this moment goes as smoothly as possible?
Talking for the first time with a child about his rare disease is not an easy thing to do and it can wreck havoc in the child’s mind. That is why it is very important to prepare this first conversation and choose your words carefully.
What I need to know:
Let’s keep in mind that every child is different, every family is different, and every parent relationship with their child is unique. Some parents communicate a lot with their children. Some others communicate less. There is no right or wrong. What is important is to take into account the family context and adapt to the situation. For instance, some parents may forget they can ask for help with this first conversation.
It makes sense to talk to your doctor or a psychologist about several possible solutions or just to know that you are not alone during this difficult time.
Also, there is no use in starting any kind of conversation if your child is in the process of being diagnosed. The risk of traumatising your child is too big so it is recommended to wait until you have a confirmed diagnosis with the complete information.
Where and how to announce a chronic disease?
The environment is very important to have this conversation: a peaceful place, calm, and closed for the privacy of the conversation.
Ensure there will be no disturbances – phone ringing, notifications, bleeps, etc. And make yourself totally available (no appointment, no meeting, no obligation at that moment or immediately after).
Make sure to devote enough time to this conversation and answer the child’s questions if necessary.
It is important to remain honest with your child and answer all his questions. It is recommended to pay attention to the words you use and the way you talk – and this, without changing any of the facts. The more honest we are, the more the child will feel at ease because he will know that the adults are being truthful to him.
What to do when the children are very young?
It is recommended to choose suitable words, adapted to the child’s age. Of course, a baby will not understand everything that is said to him, but talking to him helps to include him the real world. It is all the more so relevant to talk to your child as the family behaviour and habits are likely to change and they must understand the reasons.
Especially because they tend to think things are their fault when there is a problem.
What is important is that parents give their children the opportunity to question themselves, so that they make their own journey in their heads.
After the announcement
You must be prepared and accept that your message hasn’t been understood properly at the first attempt and that the child will ask questions anew another time.
It takes time for the child to understand and digest the information. Parents need to be patient and always remember that resources are available to them.
