Informing Parents About Positive Newborn Screen Results: Parents' Recommendations

Overview

Journal J Child Health Care

Publisher Sage Publications

Specialties Health Services
Nursing
Pediatrics

Date 2012 Sep 18

PMID 22984167

Citations 30

Authors

Natalie Salm

Elena Yetter

Audrey Tluczek

Affiliations

Soon will be listed here.

Abstract

This descriptive study examined parents' reactions to newborn screening (NBS) results and their recommendations for improving communication. Dimensional and content analyses were conducted on interviews with 203 parents of 106 infants having positive NBS results. Diagnostic results confirmed infants as having congenital hypothyroidism (n = 37), cystic fibrosis (n = 26), or being cystic fibrosis (CF)-carriers (n = 43). Parents' reactions ranged from 'very scary' to 'not too concerned'. Most reported feeling shock, panic, and worry; some reported guilt. Parents in the CF and CF-carrier groups preferred face-to-face disclosure as the communication channel; whereas congenital hypothyroidism group parents supported telephone contacts. Parents recommended providers be well informed, honest, and calm; personalize disclosure, avoid jargon, listen carefully, encourage questions, recognize parental distress, offer realistic reassurance, pace amount and rate of information, assess parents' understanding, and refer to specialists. We conclude that provider-patient communication approach and channel can exacerbate or alleviate parents' negative reactions to positive NBS results.

Citing Articles

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