Parental Perceptions and Decision-Making Processes Regarding Expanded Newborn Screening: A Qualitative Study.
4 affiliations
- 1Department of Pediatrics, Shizuoka General Hospital, Shizuoka 420-8527, Japan.
- 2Department of Medical Genetics, Shizuoka General Hospital, Shizuoka 420-8527, Japan.
- 3Graduate School of Public Health, Shizuoka Graduate University of Public Health, Shizuoka 420-0881, Japan.
- 4School of Pharmaceutical Sciences, University of Shizuoka, Shizuoka 422-8526, Japan.
Abstract
Newborn bloodspot screening (NBS) has expanded in scope owing to technological advances and the development of novel therapies. In Japan, coverage of standard NBS is nearly 100%; however, uptake of expanded newborn bloodspot screening (eNBS), which has been increasingly introduced across many regions of the country in recent years, varies across municipalities and healthcare institutions. To explore parental perspectives on eNBS, we conducted a qualitative study using semi-structured interviews with mothers of newborns delivered at Shizuoka General Hospital. Data were analyzed using reflexive thematic analysis. Stratified purposive sampling based on eNBS uptake was used to recruit both parents who accepted and those who declined eNBS, resulting in 24 participants. Three main themes were identified: (1) difficulty understanding unfamiliar rare diseases; (2) subjective interpretation based on personal experiences; and (3) perceptions of screening programs and associated costs. These themes suggested a sequential interpretive process; however, interpretations of the latter two themes varied between participants who accepted and those who declined eNBS. To support informed parental decision-making regarding eNBS and reduce barriers to screening among those who accept it, efforts should include communication tailored to parents' information needs, measures to prevent social disadvantage and discrimination associated with early identification of disease, and consideration of public financial support.
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BibTeX
@article{harazaki2026parental,
title = {{Parental Perceptions and Decision-Making Processes Regarding Expanded Newborn Screening: A Qualitative Study.}},
author = {Masashi Harazaki and Yuka Wada and Mami Notake and Naoki Takabayashi and Fumi Kurebayashi and Philip Hawke and Taichi Hatta and Takeshi Usui and Hiroshi Yamazaki},
journal = {International journal of neonatal screening},
year = {2026},
month = oct,
doi = {10.3390/ijns12040082},
url = {https://europepmc.org/article/MED/42924759},
note = {CC BY},
}
RIS
TY - JOUR
TI - Parental Perceptions and Decision-Making Processes Regarding Expanded Newborn Screening: A Qualitative Study.
AU - Masashi Harazaki
AU - Yuka Wada
AU - Mami Notake
AU - Naoki Takabayashi
AU - Fumi Kurebayashi
AU - Philip Hawke
AU - Taichi Hatta
AU - Takeshi Usui
AU - Hiroshi Yamazaki
PY - 2026
DA - 2026/10/05
JO - International journal of neonatal screening
DO - 10.3390/ijns12040082
UR - https://europepmc.org/article/MED/42924759
AB - Newborn bloodspot screening (NBS) has expanded in scope owing to technological advances and the development of novel therapies. In Japan, coverage of standard NBS is nearly 100%; however, uptake of expanded newborn bloodspot screening (eNBS), which has been increasingly introduced across many regions of the country in recent years, varies across municipalities and healthcare institutions. To explore parental perspectives on eNBS, we conducted a qualitative study using semi-structured interviews with mothers of newborns delivered at Shizuoka General Hospital. Data were analyzed using reflexive thematic analysis. Stratified purposive sampling based on eNBS uptake was used to recruit both parents who accepted and those who declined eNBS, resulting in 24 participants. Three main themes were identified: (1) difficulty understanding unfamiliar rare diseases; (2) subjective interpretation based on personal experiences; and (3) perceptions of screening programs and associated costs. These themes suggested a sequential interpretive process; however, interpretations of the latter two themes varied between participants who accepted and those who declined eNBS. To support informed parental decision-making regarding eNBS and reduce barriers to screening among those who accept it, efforts should include communication tailored to parents' information needs, measures to prevent social disadvantage and discrimination associated with early identification of disease, and consideration of public financial support.
SN - 2409-515X
ER -