Article Text

Download PDFPDF
Oral and written information about newborn screening should be concise and given to parents by primary prenatal care providers

Statistics from

Request Permissions

If you wish to reuse any or all of this article please use the link below which will take you to the Copyright Clearance Center’s RightsLink service. You will be able to get a quick price and instant permission to reuse the content in many different ways.

OpenUrlCrossRefPubMedWeb of Science

Q How knowledgeable are parents of newborns and their healthcare providers about newborn screening? What are their impressions, as well as those of newborn screening professionals, about the content and timing of newborn screening education?


Qualitative study.


Several states in the US.


Purposeful sample of 51 parents (16–39 y, 94% women) of infants <1 year of age who had experience with newborn screening; 78 healthcare professionals (23–72 y, 55% women) who provided prenatal or newborn care (24 family physicians, 17 paediatricians, 11 obstetricians, 11 labour and delivery nurses, and 15 other professionals); and 9 state newborn screening professionals (35–60 y, 67% women) (4 nurses, 3 physicians, 1 social worker, and 1 laboratory supervisor).


22 focus groups were conducted, each lasting about 1 hour, with 2–12 individuals per group. Most focus groups were conducted in person and audiotaped. 1 focus group and 3 individual interviews were conducted by telephone. Group moderators used scripted questions developed specifically for each type of participant. The …

View Full Text


  • For correspondence: Dr T C Davis, Department of Pediatrics, Louisiana State University Health Sciences Center, Shreveport, LA, USA. tdavis1{at}

  • Source of funding: Health Resources and Services Administration.