June 1996

Marital Status of Down Syndrome Parents

Author Affiliations

National Birth Defects Center 40 Second Ave Waltham, MA 02154

Arch Pediatr Adolesc Med. 1996;150(6):650-651. doi:10.1001/archpedi.1996.02170310084018

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There have been conflicting reports in the medical literature concerning the effect on the family of having a child or sibling with Down syndrome (DS). My own clinical impression, after caring for over 500 children with DS for 30 years, is that parents and siblings of individuals with DS cope quite well, and it is not as disruptive as once thought. Most physicians have not followed up these children and their families longitudinally and, therefore, have not had the opportunity of seeing how well these families adjust to having a family member with DS.

In an attempt to gain more information on this subject, the marital status (married, divorced) of our DS parents was used as 1 indicator of marital harmony or discord. Initially, in an informal fashion, 551 questionnaires were mailed to DS parents and 279 were returned completed (a 50.6% response rate). A variety of questions were asked,

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