Newborn screening: an appeal for improved parent education.

OBJECTIVE

The purpose of this study, which was part of a larger investigation of newborn screening (NBS) for cystic fibrosis (CF), was to learn how parents were informed about NBS and obtain their suggestions for improving the process of educating parents about NBS.

METHOD

Qualitative study using directed and summative content analyses was conducted on 100 interviews with 193 parents of 100 newborns recruited from 4 clinical populations including parents of infants with (1) a CF diagnosis, (2) one CF mutation and therefore CF carriers, (3) congenital hypothyroidism, and (4) normal screening results.

RESULTS

Parents described much inconsistency in the timing of and methods used to inform them about NBS. Mothers with higher income were 3.69 times more likely to receive information before their infants' births than mothers with lower income. Parents recommended improving verbal and written communication with parents about NBS at multiple junctures from preconception to the infant's first few days of life. Parents suggested that providers take time to explain the purpose and importance of NBS, which diseases are included in testing, and when parents can expect results.

CONCLUSION

These findings suggest a need to establish evidence-based guidelines for informing parents about NBS.