Discuss the disease with a child

Question

Hello.

Our CF daughter will be 2 ½ years. We wonder how to discuss the disease with her, especially the CF chronicity and the long-term treatments.

Is there a “standard” or recommended approach? Should we be proactive or wait for her questions?

Our daughter is particularly clever and able to understand complex concepts for her age. But precisely we would like to avoid going too far in our explanations.
Indeed, she’s already very anxious and we know that the unvoiced remarks lead as many problems as "over-voiced" remarks.

Of course, at present, in her mind, an illness is a cold, fever, etc ... Should we draw a parallel between these benign diseases and CF or, otherwise, immediately put CF on another level? For example, we are already trying to avoid saying that drugs cure but we say that they treat.

We hope you could give us some answers based on your experience.

We will try to discuss with the psychologist of our CF Centre but it’s far from our home so the conditions are not ideal.

Thank you in advance,
Best regards.

Answer

Dear questioner,

When and how to discuss the disease with your child? Every parent of a child with a chronic illness puts this delicate question at one time or another. It’s difficult to give you standardized advice, because above all, it depends on your sensitivity, your perception of life, your values, and your idea of parenting. The key is that you feel "comfortable" with the attitude you adopt.

You give yourself a lot of answers in your question.

Indeed, as you indicate, it’s distressing for a child (but also for an adult) not to put words on disease. Trying to hide or minimize the pain, the child could imagine more worse things and let his concern enormously increase. In fact, it’s often simply to confirm the child what it already knows, in the depths of itself. Thus, there’s no unvoiced, no misunderstanding. Establishing communication, the child knows that there’s no taboo about its health. It doesn’t necessarily need to say more than she asks. She will ask questions in proportion as her needs will arise. But she knows she could speak with you and will have the confidence to make sense of what is happening.

Of course, you have to explain CF in simple words: from symptoms to explain the situation, using the right words (feel free to name the symptoms, treatments, medical examinations ...), even if your child doesn’t really understand all terms. You could say, for example, "since we have seen your doctor, we know that it's called like that ... It could be cured with a treatment called like that ... "

Finally, you could be helped to find the right and reassuring words: read books, seek advice from a specialist (you mentioned rightly the psychologist of your CF Centre. Even punctual, his help could be valuable: he could advise you and create with you and your child a space to talk about the disease). In the meantime, I advise you to read 2 well suited brochures: "I have a serious illness ... We could talk! "(Association “Sparadrap”) and “Frimousse and the Muco-machine” [books availabe in France]. These documents are not available via internet, but you could contact by mail Dr. Sophie Ravilly (Medical Director of “Vaincre La Mucoviscidose). She could post you these booklets.

I hope this is helpful ...
Best regards.
Laëtitia Gueganton

14.07.2011