Explain the disease to older siblings

Question

Hello, we are the parents of three children aged 7, 5 and 2 years. The younger has Cystic Fibrosis. We have not explained to the older the illness of their sister. They begin to ask questions. They know she is sick, she should gain weight and eat more than them. But we do not know when to explain and if we need to be accurate. We got a little lost facing these first questions.
Should we tell them everything?
Cordially.

Answer

Hello and thank you for your question quite relevant. It has been treated in several of our publications which will inspire me for the answer. (See references below).

It is known that it is reassuring for siblings to be informed right from the diagnosis. Even very small children see, perceive, hear (almost) everything.
There is no single way to talk. It is important to put words on your feelings (including your sadness) and explain the cause to your children. Small children quickly feel guilty and responsible for what happens to their parents or siblings.
To do this, you can meet the psychologist of the CF center to help you find the right words to speak to siblings. The CF psychologist can even meet your children, if you want it now or later.
Each child must find its place among siblings, it is less easy with a sick child but it is possible and it is advisable to answer their questions and anxieties respecting the age of each.
Be wary of oversimplifications that distort understanding of the brother or sister, the word CF is difficult to pronounce but it is more accurante than bronchitis, asthma or hay fever which he may be able to endure a day.
Explain the importance of daily physiotherapy, medications, hospital visits. You can also invite them to accompany you to some visits to the medical team they will learn to know, and be able to see and hear what is happening "out there."
However, the sister or brother must also be preserved so that they can fulfill their desires outside the constraints of cystic fibrosis.

Two psychologists conducted a small book and an audio version which allows dialogue around the issue of siblings. It is a medium for the expression of feelings of siblings dealing with the illness of a brother or sister. Do not hesitate to talk to the CF psychologist.
You can also use one of two books for children: Frimousse and Muco-Machin and Camille and Dragon (both available in the CF centre or upon request to the Association: medical@vaincrelamuco.org [these literature is in French, as the question coming from the French website])

I hope this information will help you,

Sincerely,
Dr Sophie Ravilly

26.02.2013