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J Perinat Neonatal Nurs. Author manuscript; available in PMC 2010 October 1.
Published in final edited form as:
J Perinat Neonatal Nurs. 2009 Oct–Dec; 23(4): 326–334. doi: 10.1097/JPN.0b013e3181a1bc1f
PMCID: PMC2947955
NIHMSID: NIHMS182350
Newborn Screening: An Appeal for Improved Parent Education
Audrey Tluczek, Ph.D.,1,2 Kate Murphy Orland, M.S.,1 Sara Wolfgram Nick, MPH,3 and Roger L. Brown, Ph.D.1,2
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Abstract
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 were 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 (CF-C), (3) congenital hypothyroidism (CH), and (4) normal screening results (H).
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
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