Parent preferences for neurodevelopmental screening in the neonatal intensive care unit.
Rebecca A Dorner, Renee D Boss, Vera Joanna Burton and 2 others
PMID 31909496WHAT IT FOUND
Most NICU parents wanted neurodevelopmental screening to plan for the future, but they insisted on autonomy to refuse.
They asked for clear explanations of test accuracy and emotional support before results. Parents prioritized cognitive and independence outcomes over motor skills.
Key findings
01Sixteen of nineteen parents supported screening for their own infants, while three refused; most supporters still respected other parents' right to refuse.
02Parents prioritized cognitive skills and future independence as the most important outcomes, whereas only two cited motor skills or cerebral palsy as primary concerns.
03Parents requested pretest counseling to understand potential harms and test accuracy, and wanted results disclosed immediately in the NICU where support staff were available.
STILL TO COME
How it was doneWhat they foundWhat it means for PTsWhat it means for OTsWhat it means for SLPs
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What it does not show
Sample was small (19 parents) and highly educated, which may not reflect broader populations. Only English-speaking parents were included. Recruitment occurred at the bedside, potentially excluding parents who were working or managing other children. Infants were relatively low-risk neurologically, so findings may not apply to families with more severe medical complexities. Few fathers were interviewed (4 of 19), limiting insights into paternal perspectives.
Declared interests
None reported in the provided text.
The easy way to misread this
Do not interpret these preferences as evidence that screening improves patient outcomes or that it is universally desired. This study reports what parents said about a hypothetical test, not the real-world impact of actual screening protocols. Additionally, do not assume all parents share the same priorities; those with prior disability experience had different perspectives than those without.