Parents' perspective on having a child with Down Syndrome in France

Abstract

In 2011, Skotko, Levine, and Goldstein asked parents who had children with Down Syndrome (DS) in the United States how they felt about having a child with DS. The purpose of the present study was to ask the same questions to parents living in France so that this information could be shared with new and expectant parents. The results were also compared to the findings of Skotko, Levine, and Goldstein (2011a) to see whether some parental feelings might be universally shared and to discuss the differences observed. This web-based survey was shared with a number of DS organizations and online DS communities. Of the 369 respondents living in France, 99% indicated that they loved their son or daughter with DS; 98% were proud of their child with DS; 78% felt that their outlook on life was more positive because of their son or daughter with DS; 12% felt embarrassed by their child with DS; and 7% expressed regret for having a child with DS. A significant number of respondents admitted that raising a child with DS was not without challenges. Nevertheless, most respondents indicated that their son or daughter with DS had had a positive impact on their life and that of their family and that they were happy to have their child.

Keywords: Down Syndrome; attitudes; parent; prenatal diagnosis; trisomy 21.