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Genetics in Medicine:
April 2007 - Volume 9 - Issue 4 - pp 235-240
doi: 10.1097/GIM.0b013e31803d16d8
Article

Characteristics and perspectives of families waiting to adopt a child with Down syndrome

Lindh, Heidi L. MS; Steele, Robin BA; Page-Steiner, Jane BA; Donnenfeld, Alan E. MD

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Abstract

Purpose: The study's purpose was to obtain information on the characteristics and perspectives of families interested in adopting children with Down syndrome.

Methods: A questionnaire-based survey was administered to individuals and families on a waiting list to adopt children with Down syndrome. Information on (1) demographic, (2) family structure, (3) Down syndrome exposure, (4) Down syndrome knowledge, (5) reasons for considering adoption, (6) adoption process, and (7) perspective on raising children with Down syndrome was assessed.

Results: From 199 mailed surveys, there were 72 respondents (36.2%) of whom six had previously adopted a child with Down syndrome. Forty-eight percent learned of the possibility of adopting children with Down syndrome through the Internet, whereas only one respondent obtained this information from a medical professional. The primary reasons for considering adoption were that prospective adoptive families were equipped with the necessary resources and had previous positive experiences with individuals who have Down syndrome.

Conclusions: Many families are eager to adopt children with Down syndrome. Interest in this option stems from having resources to care for these children and previous positive experiences with individuals with Down syndrome. Information regarding adoption was rarely obtained from health care providers. When counseling pregnant women diagnosed with a Down syndrome fetus, adoption should be discussed so that all options regarding pregnancy management may be explored.

©2007The American College of Medical Genetics

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