Experience of mothers with Down syndrome children at the time of diagnosis.

Abstract

Down's syndrome (DS) is a common genetic disorder. The families of children with DS generally do not receive sufficient information at the time of the diagnosis. They are dissatisfied with the manner of healthcare professionals. The objective was to evaluate the experiences of mothers of children with DS at the time of the diagnosis and the communicative attitudes of healthcare professionals. Mothers who had children with Down syndrome were included. The experiences of the mothers at the time of diagnosis and the attitudes of the healthcare professionals were evaluated by a semistructured interview. The study sample was 43 mothers. Eight children had been diagnosed with DS prenatally, and 35 had been diagnosed postnatally. Eighteen of the mothers had received the diagnosis in a pediatric clinic, and 16 had been told of the diagnosis in an obstetric clinic. More than half the mothers had received the first information about their child's diagnosis from a pediatrician. Only five of the 43 mothers had received detailed information. Twenty-three of 32 mothers said that they were met with a negative attitude. Generally, the time put aside to inform the families about the diagnosis was less than 5 min. Mothers of DS children want more information about DS from healthcare professionals. Furthermore, they want this information to be delivered in a supportive and sensitive manner. Healthcare professionals, especially pediatricians need to allocate sufficient time to discuss DS and its challenges with the family.