OBJECTIVES: To describe mothers' perception of the information process of the diagnosis of Down Syndrome and its impact on the family dynamic, and to describe mothers' knowledge of Down Syndrome and expectations regarding their child's future. METHODS: This was a qualitative descriptive study. The sample consisted of three mothers of children under 12 months years old who were in-patients in a Pediatric Intensive Care Unit of a University Hospital in 2004 and 2005. RESULTS: The findings suggested that sometimes the information process of the diagnosis of Down syndrome is inappropriate, mothers lack knowledge of the Down syndrome, and mothers' expectations regarding their child's future are focused on short term progresses and improvements. CONCLUSION: Lack of knowledge and uncertainty of behaviors and attitudes of family members regarding the diagnosis of Down syndrome lead mothers to hide the diagnosis from extended family members and in many instances even from the father. These suggest the need of professional support for the mothers and their family.
Family; Down Syndrome; Family relations; Mother-child relations; Activities of daily living