[Announcing the diagnosis of a genetic disease and psychological care of the patient and family].
Announcing a diagnostic of genetic disease to a child is for parents such a pain, also brutal and destructive. Even if the physician chooses the best moment, the right words, it's a sign of a rupture, a real disaster combined with physical feeling of bascule and temporo-spacial confusion. It's a beach in their flesh, a lost of identity, a profound norcissic failure. In addition this feature is associated with a high feeling of guilt failure with sometimes non logical imaginary structures. All those testimonies confirm that the identification of a genetic disease is a key in the family history. Announcing a diagnostic almost stay in mind as a bad new enduring a period of life when disease was absent or undiagnosed. Even if previews complementary investigations were done, the revelation still stays a mess. Also the diagnosis could be a relief the beginning of a new life with possibility of rebuilding. Regarding genetic diseases, it's the whole family that is concerned. The patients will deal with the diseases daily sometimes invisible by the circle. After the announcement of the diagnosis, the parents will have to structure that life according to the changes that the diseases rags in the family Brothers and sisters will have to find their place compared to this affetted brother or sister. In the some time as finding answers too many questions. The grand parents may feel guilty and wonder how to help the parents. The main part to this psychological approach in genetic diseases is to give each member of the family his role.
Lacombe
Didier
D
Service de Génétique médicale, Hôpital Pellegrin-Enfants, CHU de Bordeaux (33), France. didier.lacombe@chu-bordeaux.fr
Toussaint
Eva
E
D002648:Child; D030342:Genetic Diseases, Inborn / Q000175:diagnosis*; D006801:Humans; D010290:Parents / Q000523:psychology*; D010817:Physician-Patient Relations; D035781:Siblings / Q000523:psychology; D014342:Truth Disclosure