Informing parents about positive newborn screen results: parents' recommendations

J Child Health Care. 2012 Dec;16(4):367-81. doi: 10.1177/1367493512443906. Epub 2012 Sep 14.


This descriptive study examined parents' reactions to newborn screening (NBS) results and their recommendations for improving communication. Dimensional and content analyses were conducted on interviews with 203 parents of 106 infants having positive NBS results. Diagnostic results confirmed infants as having congenital hypothyroidism (n = 37), cystic fibrosis (n = 26), or being cystic fibrosis (CF)-carriers (n = 43). Parents' reactions ranged from 'very scary' to 'not too concerned'. Most reported feeling shock, panic, and worry; some reported guilt. Parents in the CF and CF-carrier groups preferred face-to-face disclosure as the communication channel; whereas congenital hypothyroidism group parents supported telephone contacts. Parents recommended providers be well informed, honest, and calm; personalize disclosure, avoid jargon, listen carefully, encourage questions, recognize parental distress, offer realistic reassurance, pace amount and rate of information, assess parents' understanding, and refer to specialists. We conclude that provider-patient communication approach and channel can exacerbate or alleviate parents' negative reactions to positive NBS results.

Publication types

  • Research Support, N.I.H., Extramural
  • Research Support, Non-U.S. Gov't

MeSH terms

  • Adult
  • Communication
  • Congenital Hypothyroidism / diagnosis
  • Cystic Fibrosis / diagnosis
  • Cystic Fibrosis / genetics
  • Female
  • Genetic Carrier Screening
  • Humans
  • Infant, Newborn
  • Infant, Newborn, Diseases / diagnosis*
  • Interviews as Topic
  • Male
  • Neonatal Screening / methods*
  • Neonatal Screening / psychology
  • Neonatal Screening / standards
  • Parents / psychology*