title: Having a son or daughter with Down syndrome: perspectives from mothers and fathers.
abstract: This study asks parents who have children with Down syndrome (DS) how they feel about their lives so that such information could be shared with expectant couples during prenatal counseling sessions. A valid and reliable survey instrument was mailed to 4,924 households on the mailing lists of six non-profit DS organizations. Of the 2,044 respondents, 99% reported that they love their son or daughter; 97% were proud of them; 79% felt their outlook on life was more positive because of them; 5% felt embarrassed by them; and 4% regretted having them. The parents report that 95% of their sons or daughters without DS have good relationships with their siblings with DS. The overwhelming majority of parents surveyed report that they are happy with their decision to have their child with DS and indicate that their sons and daughters are great sources of love and pride.
authors.affiliation: Division of Genetics, Department of Medicine, Children's Hospital Boston, Massachusetts, USA. brian.skotko@childrens.harvard.edu
authors.forename: Brian G
authors.initials: BG
authors.lastname: Skotko
authors.forename: Susan P
authors.initials: SP
authors.lastname: Levine
authors.forename: Richard
authors.initials: R
authors.lastname: Goldstein
mesh_terms: D000328:Adult; D000704:Analysis of Variance; D004314:Down Syndrome; D004644:Emotions; D005220:Fathers / Q000523:psychology*; D005260:Female; D005817:Genetic Counseling / Q000379:methods; D006801:Humans; D008297:Male; D008875:Middle Aged; D009035:Mothers / Q000523:psychology*; D011788:Quality of Life / Q000523:psychology*; D012044:Regression Analysis; D011795:Surveys and Questionnaires; D014481:United States