title: The impact of false-positive newborn screening results on families: a qualitative study.
abstract: OBJECTIVE
  Newborn screening leads to improved treatment and disease outcomes, but false-positive newborn screening results may cause distress for parents. The purpose of this study was to describe the experiences of families who receive a false-positive newborn screening result in an attempt to discover ways to help improve the newborn screening communication process for families.
  
  
  METHODS
  This was a qualitative study using two methods of data collection: in-depth, semistructured interviews and focus groups. Participants (N = 27) were parents whose children (ages 6-16 months) underwent follow-up testing after newborn screening and whose follow-up test results indicated that the newborn screening result was a false-positive.
  
  
  RESULTS
  Our analysis found that parents who have a false-positive newborn screening result experience five distinct stages. Most parents did not report long-term negative impacts of the experience, but some experienced some residual worry. Participants described effective provider communication as key in mitigating stress. Some parents identified the experience as leading to positive outcomes.
  
  
  CONCLUSIONS
  Identifying best practices for communication between the health care providers and parents is an essential component in improving the newborn screening process. Further research is needed to discover best practices for communication to minimize potential harm and maximize the benefits of newborn screening.
authors.affiliation: Department of Neurology and Center for Genetic Medicine Research, Children's National Medical Center, Washington, DC, USA.
authors.forename: Johanna L
authors.initials: JL
authors.lastname: Schmidt
authors.forename: Karen
authors.initials: K
authors.lastname: Castellanos-Brown
authors.forename: Saltanat
authors.initials: S
authors.lastname: Childress
authors.forename: Natasha
authors.initials: N
authors.lastname: Bonhomme
authors.forename: Julianne S
authors.initials: JS
authors.lastname: Oktay
authors.forename: Sharon F
authors.initials: SF
authors.lastname: Terry
authors.forename: Penny
authors.initials: P
authors.lastname: Kyler
authors.forename: Amy
authors.initials: A
authors.lastname: Davidoff
authors.forename: Carol
authors.initials: C
authors.lastname: Greene
mesh_terms: D000223:Adaptation, Psychological; D000328:Adult; D003142:Communication; D005189:False Positive Reactions; D005260:Female; D005500:Follow-Up Studies; D006801:Humans; D007223:Infant; D007231:Infant, Newborn; D007406:Interview, Psychological; D008297:Male; D015997:Neonatal Screening / Q000523:psychology*; D010290:Parents / Q000523:psychology*; D036301:Qualitative Research; D013404:Suggestion; D055815:Young Adult