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Informing Parents about Newborn Screening: A European Comparison Study

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 a...

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Autores principales: IJzebrink, Amber, van Dijk, Tessa, Franková, Věra, Loeber, Gerard, Kožich, Viktor, Henneman, Lidewij, Jansen, Marleen
Formato: Online Artículo Texto
Lenguaje:English
Publicado: MDPI 2021
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7930998/
https://www.ncbi.nlm.nih.gov/pubmed/33652810
http://dx.doi.org/10.3390/ijns7010013
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author IJzebrink, Amber
van Dijk, Tessa
Franková, Věra
Loeber, Gerard
Kožich, Viktor
Henneman, Lidewij
Jansen, Marleen
author_facet IJzebrink, Amber
van Dijk, Tessa
Franková, Věra
Loeber, Gerard
Kožich, Viktor
Henneman, Lidewij
Jansen, Marleen
author_sort IJzebrink, Amber
collection PubMed
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’ 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.
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spelling pubmed-79309982021-03-05 Informing Parents about Newborn Screening: A European Comparison Study IJzebrink, Amber van Dijk, Tessa Franková, Věra Loeber, Gerard Kožich, Viktor Henneman, Lidewij Jansen, Marleen Int J Neonatal Screen Article 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’ 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. MDPI 2021-02-26 /pmc/articles/PMC7930998/ /pubmed/33652810 http://dx.doi.org/10.3390/ijns7010013 Text en © 2021 by the authors. Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (http://creativecommons.org/licenses/by/4.0/).
spellingShingle Article
IJzebrink, Amber
van Dijk, Tessa
Franková, Věra
Loeber, Gerard
Kožich, Viktor
Henneman, Lidewij
Jansen, Marleen
Informing Parents about Newborn Screening: A European Comparison Study
title Informing Parents about Newborn Screening: A European Comparison Study
title_full Informing Parents about Newborn Screening: A European Comparison Study
title_fullStr Informing Parents about Newborn Screening: A European Comparison Study
title_full_unstemmed Informing Parents about Newborn Screening: A European Comparison Study
title_short Informing Parents about Newborn Screening: A European Comparison Study
title_sort informing parents about newborn screening: a european comparison study
topic Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7930998/
https://www.ncbi.nlm.nih.gov/pubmed/33652810
http://dx.doi.org/10.3390/ijns7010013
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