Parent preferences for neurodevelopmental screening in the neonatal intensive care unit
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Updated: Dec 31, 2025
Assessment and Evaluation of the High Risk Neonate: The NICU Network Neurobehavioral Scale
Published on: August 25, 2014
Rebecca A Dorner1, Renee D Boss1,2, Vera Joanna Burton3,4
1Division of Perinatal-Neonatal Medicine, Department of Pediatrics, Johns Hopkins University School of Medicine, Baltimore, MD, USA.
Insights
Parents of infants in neonatal intensive care units (NICUs) desire early neurodevelopmental screening. They want autonomy, emotional preparation, and pretest counseling for results, especially concerning future disabilities.
Area of Science:
- Neonatal care
- Developmental pediatrics
- Disability screening
Background:
- Neonatal intensive care units (NICUs) care for high-risk infants.
- Early identification of neurodevelopmental disabilities is crucial.
- Parental preferences for receiving screening information are not well understood.
Purpose of the Study:
- To explore how parents of NICU infants wish to receive early neurodevelopmental screening information.
- To understand parental desires regarding information on future risks of cerebral palsy and other disabilities.
Main Methods:
- Qualitative interview study design.
- Semi-structured interviews conducted with parents of hospitalized preterm infants.
- Directed content analysis approach used for data analysis.
Main Results:
- Four key themes emerged: acceptability (parents favored screening with refusal option), disclosure (desire for emotional preparation, especially for false positives), emotional burden of uncertainty (distress from increased uncertainty), and disability (prior experience influencing concerns).
- Thematic saturation was reached after 19 interviews.
- Parents' prior experiences with disability significantly shaped their views on screening risks and benefits.
Conclusions:
- Most NICU parents are interested in early developmental screening for their infants.
- Parents prioritize autonomy, pretest counseling, and emotional preparation when receiving screening results.
- Understanding parental perspectives is essential for effective implementation of neurodevelopmental screening in the NICU setting.
Aim:
To determine whether, and how, neonatal intensive care unit (NICU) parents want to receive early neurodevelopmental screening information about their child's future risk of cerebral palsy and other disabilities.
Method:
This was a qualitative interview study. Parents of hospitalized infants born preterm completed semi-structured interviews. Data were analysed using a directed content analysis approach.
Results:
Thematic saturation was achieved after 19 interviews. Four themes characterized parent perceptions of early neurodevelopmental screening: (1) acceptability: most parents were in favour of neurodevelopmental screening if parents could refuse; (2) disclosure of results: parents want emotional preparation for results, especially false positives; (3) emotional burden of uncertainty: parents of children in the NICU balance taking their infant's illness 'day by day' and preparing for an uncertain future. Parents expressed distress with screening that increased uncertainty about the future; and (4) disability: prior experience with disability informs parent concerns.
Interpretation:
Parents interpret the risks and benefits of NICU developmental screening through the lens of prior experiences with disability. Most expressed interest in screening and emphasized a desire for autonomy, pretest counselling, and emotional preparation.
What This Paper Adds:
Most parents with infants in the neonatal intensive care unit expressed interest in early screening for developmental disability. Prior experience with disability informed concerns about specific deficits. Parents emphasized a desire for autonomy, pretest counselling, and emotional preparation.
