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.)
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
Contact: Jamie Newton
Children's Hospital Boston