TY - JOUR
T1 - Informing parents about newborn screening
T2 - A European Comparison Study
AU - Ijzebrink, Amber
AU - van Dijk, Tessa
AU - Franková, V. ra
AU - Loeber, Gerard
AU - Kožich, Viktor
AU - Henneman, Lidewij
AU - Jansen, Marleen
N1 - Funding Information: This research was funded by the International Society of Neonatal Screening (ISNS), Project Patient Information Internationally. T.v.D. and L.H. received funding from ZonMw to study the psychosocial aspects of NBS (Grant 543002006). Publisher Copyright: © 2021 by the authors. Copyright: Copyright 2021 Elsevier B.V., All rights reserved.
PY - 2021
Y1 - 2021
N2 - 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’ decisionmaking, 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.
AB - 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’ decisionmaking, 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.
KW - European information products
KW - Informed decision
KW - Knowledge aspects
KW - Newborn screening (NBS)
KW - Parental information
UR - http://www.scopus.com/inward/record.url?scp=85106522068&partnerID=8YFLogxK
U2 - https://doi.org/10.3390/ijns7010013
DO - https://doi.org/10.3390/ijns7010013
M3 - Article
C2 - 33652810
SN - 2409-515X
VL - 7
JO - International Journal of Neonatal Screening
JF - International Journal of Neonatal Screening
IS - 1
M1 - 13
ER -