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Updated: Jul 30, 2026
Assessment and Evaluation of the High Risk Neonate: The NICU Network Neurobehavioral Scale
Published on: August 25, 2014
Parents' perceptions of medical diagnoses and related issues for their high-risk infants
C J Simons1, S K Ritchie, M D Mullett
1Department of Psychology, Pennsylvania State University, Uniontown, USA.
Insights
Parents often misperceive their infant's medical diagnoses and ongoing effects after neonatal intensive care unit (NICU) hospitalization, impacting their fears and health status ratings.
Area of Science:
- Neonatal Health
- Parental Perceptions
- Medical Diagnosis Communication
Background:
- Maternal and paternal understanding of infant medical diagnoses is crucial for care.
- Discrepancies between parental and hospital records of infant diagnoses are common.
- Parental perceptions may influence their views on infant health and future outcomes.
Purpose of the Study:
- Compare parental perceptions of infant diagnoses with hospital records.
- Examine the relationship between infant condition perceptions and other parental views.
- Identify diagnoses linked to parental expectations of current or future infant effects.
Main Methods:
- Utilized a questionnaire for 76 parents of infants hospitalized in a NICU.
- Collected data on reported medical diagnoses and parental perceptions of eight other issues.
- Compared parental reports with hospital chart diagnoses.
Main Results:
- Parents reported only 62% of infant diagnoses, differing significantly from chart diagnoses.
- Perceived ongoing effects of diagnoses correlated with parental fears, perceived prematurity effects, reported infant restrictions, and lower health status ratings.
- Parental perceptions of diagnosis effects appeared inaccurate relative to actual diagnoses.
Conclusions:
- Parental underreporting of diagnoses suggests potential inaccuracies in perception.
- Parents perceiving continued effects of diagnoses exhibited less optimal views on related issues.
- Parental expectations of ongoing diagnosis effects often seemed unwarranted based on actual diagnoses.
Introduction:
The objectives of this study were (a) to compare maternal and paternal perceptions of infant medical diagnoses with hospital-chart diagnoses, (b) to examine whether parental perceptions of infant medical condition (using three variables) were related to eight other parental perceptions, and (c) to determine what medical diagnoses were associated with parental expectations that neonatal diagnoses were having current effects of would have future effects on their infant.
Method:
With a questionnaire format 76 parents reported information about medical diagnoses and their perceptions about eight other issues for their infants who had been hospitalized in an NICU.
Results:
Parents reported approximately 62% of the medical diagnoses for their infants during NICU hospitalization; these significantly differed from hospital-chart diagnoses. Parents who reported current or future effects of neonatal diagnoses also (a) had fears for their infants while in the hospital or currently, (b) perceived prematurity as having current or future effects, (c) reported restrictions for their infants caused by neonatal diagnoses, and (d) gave less optimal ratings for their infants' current health status. Parents' perceptions of current or future effects of neonatal diagnoses appeared to be inaccurate given the actual diagnoses for their infants.
Discussion:
The underreporting of diagnoses by parents raises several issues as to how accurately parents are perceiving their infants. Parents who perceived continued effects of neonatal diagnoses also had less optimal perceptions of other related issues. Parent's perceptions of continued effects of neonatal diagnoses appeared to be unwarranted with respect to the actual diagnoses assigned to their infants.
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