Prenatally diagnosed Down syndrome: mothers who continued their pregnancies evaluate their health care providers

Abstract

Objective: This study was undertaken to ask mothers who had children with Down syndrome after receiving a prenatal diagnosis: How was the process and what, if anything, could be improved?

Study design: An 11-page survey was mailed to 2945 persons on the membership lists of 5 Down syndrome parent organizations. The survey gathered both quantitative and qualitative data from yes/no questions, open-ended questions, and a series of statements asking the mothers to rate their level of agreement on a 1-to-7 Likert scale. Qualitative data were analyzed using the Constant Comparative Method of Qualitative Analysis, and quantitative data were summarized using linear regressions, mixed stepwise multiple regressions, and grouped means, 1-way analysis of variance analyses.

Results: Of 1126 surveys received, 141 (12.5%) were from mothers who had received a prenatal diagnosis. Though satisfied with the care that they had received, the majority of respondents expressed frustration with the process. The most common suggestions were that the diagnosis be conveyed in person, that up-to-date printed materials on Down syndrome (DS) be provided, and that mothers be referred to local DS support groups.

Conclusion: Receiving a prenatal diagnosis of DS need not be a negative experience. By implementing suggestions proposed herein by the mothers, health care providers can even make the situation a positive one.