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Int J Neonatal Screen. 2019 Sep 18;5(3):35. doi: 10.3390/ijns5030035. eCollection 2019 Sep.

Factors Influencing Parental Awareness about Newborn Screening.

International journal of neonatal screening

Věra Franková, Alena Dohnalová, Karolína Pešková, Renata Hermánková, Riona O'Driscoll, Pavel Ješina, Viktor Kožich

Affiliations

  1. Department of Pediatrics and Adolescent Medicine, Charles University First Faculty of Medicine and General University Hospital, Ke Karlovu 2, 128 04 Prague 2, Czech Republic; [email protected] (K.P.); [email protected] (R.H.); [email protected] (R.O.); [email protected] (P.J.).
  2. Institute for Medical Humanities, First Faculty of Medicine, Charles University, Karlovo nám?stí 40, 128 08 Prague 2, Czech Republic.
  3. Institute of Physiology, First Faculty of Medicine, Charles University, Albertov 5, 128 00 Prague 2, Czech Republic; [email protected].

PMID: 33072994 PMCID: PMC7510194 DOI: 10.3390/ijns5030035

Abstract

Appropriate and timely education about newborn screening (NBS) helps to foster benefits such as prompt follow up, to promote parents' autonomy via informed consent and minimize the harms such as reducing the impact of NBS false-positive results. The aim of this study was to ascertain how mothers are informed about NBS in the Czech Republic and to identify the variables associated with awareness about NBS. The questionnaires evaluating awareness and its determinants were mailed to a random sample of 3000 mothers 3 months post-delivery. The overall response rate was 42%. We analysed 1100 questionnaires and observed that better awareness about NBS was significantly associated with age, parity, number of information sources, child health status, size of maternity hospital and an obstetrician as the source of prenatally obtained information. Although the majority of mothers (77%) in our study recalled being informed by a physician or nurse in the neonatal ward, results have revealed that over 40% of participants did not have sufficient awareness about the principal aspects of NBS. Several measures including seminars for healthcare providers and the development and distribution of new educational materials were adopted to improve parental education about NBS in the Czech Republic.

© 2019 by the authors.

Keywords: consent; education; newborn screening; parental awareness; survey

Conflict of interest statement

Conflicts of InterestThe authors declare no conflict of interest.

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