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Newborn screening can cause unnecessary parental stress

atements such as "My child makes more demands on me than most children.")

Waisbren believes a positive test result can increase expectations of illness even when it is later found to be in error. "We're not sure why maybe it feeds into a general nervousness as new parents," she speculates. "But our results also show that parental stress was greater when families didn't have adequate information and understanding."

Two-thirds of parents with false-positive results did not correctly understand why their child was called back for a repeat test, the study found. Mothers who knew the correct reason had reduced stress. (This was not true for fathers, however.)

Other findings:

  • Some parents had to wait as long as a month to get the result of the second test, and 26 percent voiced concerns about the length of time before a diagnosis was ruled out.
  • Half of all parents in the false-positive group said they hadn't been told, or didn't remember being told, that the diagnosis had been ruled out.
  • Of these, 22 percent said they were told they wouldn't be notified unless a problem was found, and 24 percent were required to ask their pediatrician for the test results. "A few parents didn't even know they'd had a repeat test," Waisbren says.
  • Sixty-one percent of parents felt a need for more information about newborn screening and the test result.

The researchers suggest that improved and better-timed education may reduce parental stress related to newborn screening. "There needs to be a specific communication plan for informing parents at every step," Gurian says. "Currently, pediatricians are the primary distributors of this information, but some pediatricians don't feel knowledgeable enough about these rare metabolic disorders to explain a positive test to a parent. It would be good to begin involving obstetricians and to begin educating parents about newborn screening du
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Contact: Jamie Newton
james.newton@childrens.harvard.edu
617-355-6420
Children's Hospital Boston
5-Jun-2006


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