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Published online January 3, 2005
PEDIATRICS Vol. 115 No. 1 January 2005, pp. 64-77 (doi:10.1542/peds.2004-0928)
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Mothers of Children With Down Syndrome Reflect on Their Postnatal Support

Brian Skotko, BS

From Harvard Medical School, Boston, Massachusetts

Objective. Since 1964, researchers have been examining the ways in which physicians deliver a postnatal diagnosis of Down syndrome (DS). Almost all of the studies, however, have been limited to reflections or very small sample sizes. The objective of this study was to document, in the most robust comprehensive way, the reflections of mothers in the United States who received diagnoses of DS for their children.

Methods. An 11-page survey was mailed to 2945 persons on the membership lists of 5 DS parent organizations. The survey gathered both quantitative and qualitative data with yes/no questions, open-ended questions, and a series of statements asking the mothers to rate their level of agreement on a Likert scale of 1 to 7.

Results. Of the 1250 responses (42.4%), 985 were from mothers who received postnatal diagnoses of DS for their children. The majority of these mothers reported being frightened or anxious after learning the diagnosis, and very few rated the overall experience as a positive one. Mothers reported that their physicians talked little about the positive aspects of DS and rarely provided enough up-to-date printed materials or telephone numbers of other parents with children with DS. Improvement has been made with time, albeit slowly.

Conclusion. Mothers have called on physicians to improve the way in which postnatal diagnoses are delivered. Specific recommendations are offered.

Key Words: Down syndrome • postnatal • diagnosis • medical support

Abbreviations: DS, Down syndrome • CVS, chorionic villus sampling • OB, obstetrician

Accepted Jun 14, 2004.


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eLetters:

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misinformed on Down syndrome
Cheryl B Young
Pediatrics Online, 3 Jan 2005 [Full text]
Author Response to: Misinformed on Down syndrome
Brian G Skotko
Pediatrics Online, 3 Jan 2005 [Full text]
Bravo
Amy Sue Martin
Pediatrics Online, 5 Jan 2005 [Full text]
When do you inform about the positive aspects of Downs sydrome?
Thor WR Hansen
Pediatrics Online, 8 Feb 2005 [Full text]
Author response: When do you inform about the positive aspects of Downs sydrome?
Brian G Skotko
Pediatrics Online, 11 Apr 2005 [Full text]