The process of how mothers with down's syndrome children learn about the diagnosis: A qualitative research

Abstract

Aim: Healthcare providers have an important role in notifying mothers about their children's handicap, in other words, the bad news. The mothers' acceptance of the newborns, adapting to the process and the family dynamics are thought to be affected by this first notification period, so it is assumed to be a very important period. There have been important speculations about notifications regarding the child's physical and psychological well-being and about the parent's unhappiness. It was found that there is insufficient literature about how and when the parents should be notified about their child's handicap; in fact, it was noticed that this topic was not covered in our country at all. In this light, the aim of this study is to determine how mothers who have children with Down's syndrome are notified, and how they prefer to be notified. Material and Method: In order to determine the mothers' preferences for the notification, a comprehensive literature survey, and interviews that are a qualitative method have been used. The participants consisted of 21 mothers whose children attended two different private rehabilitation centers in Istanbul and Karabuk. In analyzing the data, the "Interview Form" and the transcripts of the interview recordings were used. Consecutive coding from A1 to A21 was done to describe the participants. Results: The findings show that the mothers were not pleased with the first notifications and that they are critical of the current notification system. According to our results, various suggestions to doctors were done. Discussion: Informing mothers that they have a different child is an important task for doctors that will affect the relationship between thischild and the mother throughout their lives. For this reason, it is very important that doctors are knowledgeable and sensitive about the reporting process