Newborn Screening

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Topics: Cystic fibrosis
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2947955/

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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
Author information ► Copyright and License information ►
The publisher 's final edited version of this article is available at J Perinat Neonatal Nurs
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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



References: 4. Kerem BS, Rommens JM, Buchanan JA, Markiewicz D, Cox TK, Chakravarti A, et al. Identification of the cystic fibrosis gene: genetic analysis. Science. 1989;245:1073–1080. [PubMed] 5. Rock MJ 6. Campbell ED, Ross LF. Parental attitudes regarding newborn screening of PKU and DMD. American Journal of Medical Genetics. 2003;120A:209–214. [PubMed] 7. Campbell ED, Ross LF 8. Ciske DJ, Haavisto A, Laxova A, et al. Genetic counseling and neonatal screening for cystic fibrosis: an assessment of the communication process. Pediatrics. 2001;107(4):669–705. 13. Hsieh HF, Shannon SE. Three Approaches to Qualitative Content Analysis. Qualitative Health Research. 2005 November;15(9):1277–1288. [PubMed] 14. Krippendorff K. Content Analysis: An Introduction to Its Methodology. second ed 19. Agresti A. A survey of exact inference for contingency tables. Statistical Science. 1992;7(1):131–177. 20. Gart J. Point and interval estimation of the common odds ratio in the combination of 2 × 2 tables with fixed marginals. Biometrika. 1970;57:471–475. 26. Kim S, Lloyd-Puryear MA, Tonniges TF. Examination of the communication practices between state newborn screening programs and the medical home. Pediatrics. 2003;111(2):120–126. Genetic counseling and neonatal screening for cystic fibrosis: an assessment of the communication process.[Pediatrics. 2001] * ------------------------------------------------- Newborn screening for cystic fibrosis: parents ' preferences regarding counseling at the time of infants ' sweat test.[J Genet Couns. 2006] * ------------------------------------------------- Psychosocial risk associated with newborn screening for cystic fibrosis: parents ' experience while awaiting the sweat-test appointment.[Pediatrics. 2005] * ------------------------------------------------- Challenges in implementing a successful newborn cystic fibrosis screening program.[J Pediatr. 2005] * ------------------------------------------------- Information flow after a positive newborn screening for cystic fibrosis.[J Pediatr. 2005] See reviews...See all... Parental information use in the context of newborn bloodspot screening. An exploratory mixed methods study[Journal of Community Genetics. 2012] * ------------------------------------------------- Newborn screening education on the internet: a content analysis of North American newborn screening program websites[Journal of community genetics. 2011] * ------------------------------------------------- Genetic Screening[Epidemiologic Reviews. 2011] See all...

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