Informing Parents about Newborn Screening: A European Comparison Study

Result code in IS VaVaI

<a href="https://www.isvavai.cz/riv?ss=detail&h=RIV%2F00216208%3A11110%2F21%3A10428003" target="_blank" >RIV/00216208:11110/21:10428003 - isvavai.cz</a>

Alternative codes found

RIV/00064165:_____/21:10428003

Result on the web

<a href="https://verso.is.cuni.cz/pub/verso.fpl?fname=obd_publikace_handle&handle=CZhm5INt-h" target="_blank" >https://verso.is.cuni.cz/pub/verso.fpl?fname=obd_publikace_handle&handle=CZhm5INt-h</a>

DOI - Digital Object Identifier

<a href="http://dx.doi.org/10.3390/ijns7010013" target="_blank" >10.3390/ijns7010013</a>

Result language

angličtina

Original language name

Informing Parents about Newborn Screening: A European Comparison Study

Original language description

Knowledge about newborn screening (NBS) is an important factor for parents to make an informed decision about participation. In Europe, countries inform parents differently about their NBS program, potentially including different knowledge aspects in their information. The aim of this study was to assess twenty-six European parental information products and to analyze their knowledge aspects through a content analysis. The analyzed aspects were compared to a list of eight knowledge aspects from scientific literature. The list includes aspects important for parents&apos; decision-making, such as the purpose of screening. The study showed that most of the eight knowledge aspects are included in NBS information products of the majority of countries. However, there were differences between countries, for example in the amount of detail and phrasing of the information. Additional relevant knowledge aspects have also been identified and are recommended to optimize information products, such as the handling of residual bloodspot samples. This study only assessed knowledge aspects in information products meant for printing, but many countries also use other communication methods, and the impact on knowledge of the delivery of the information needs further study. Preferences of parents on alternative communication methods need to be considered and evaluated on their effectiveness.

Czech name

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Czech description

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Type

J_imp - Article in a specialist periodical, which is included in the Web of Science database

CEP classification

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OECD FORD branch

30209 - Paediatrics

Project

—

Continuities

V - Vyzkumna aktivita podporovana z jinych verejnych zdroju

Publication year

2021

Confidentiality

S - Úplné a pravdivé údaje o projektu nepodléhají ochraně podle zvláštních právních předpisů

Name of the periodical

International Journal of Neonatal Screening [online]

ISSN

2409-515X

e-ISSN

—

Volume of the periodical

7

Issue of the periodical within the volume

1

Country of publishing house

CH - SWITZERLAND

Number of pages

13

Pages from-to

13

UT code for WoS article

000633123500001

EID of the result in the Scopus database

2-s2.0-85106522068