Jonathan M Artal, Lindsey Randall, Sabina Rubeck, Megan Allyse, Marsha Michie, Kirsten A Riggan, Stephanie Meredith, Brian G Skotko
A 2003 survey revealed the scope of mothers' dissatisfaction with their postnatal support following a diagnosis of Down syndrome (DS). Substantial proportions of mothers reported that providers conveyed diagnoses with pity, emphasized negative aspects of DS, and neglected to provide adequate materials explaining DS. This study follows up on the 2003 survey by assessing whether parents' experiences have improved. Four DS nonprofit organizations, which participated in the original study, distributed a mixed-methods survey to families who have had children with DS between 2003 and 2022...
April 15, 2024: American Journal of Medical Genetics. Part A