Announcing a Genetic Disorder to a Child: Desire to Know, Need to Understand

The announcement of the diagnosis to the child remains a complex problem on which there is no consensus. When there is no curative or preventive treatment it is difficult for parents and doctors to speak with the child about the disease and its genetic origin. One of the fundamental aspects of the announcement to the child is to accompany him in his quest to know and attempt to give sense to what is happening to him. The questions that the child may ask himself about his disease are deeply involved with the epistemic impulse, which determines for many the attitude the child may have towards knowledge and future learning. The desire to know and to understand in the child should not be stifled by the will to spare him some supposed suffering that words could, on the contrary, free him of. Concerning the announcement, the most important is not to inform the child at any cost, but to establish a dialogue with him which will be punctuated by his own questions.