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Assessment and Evaluation of the High Risk Neonate: The NICU Network Neurobehavioral Scale
Published on: August 25, 2014
Parents' experiences of expanded newborn screening evaluations
Jane M DeLuca1, Margaret H Kearney, Sally A Norton
1University of Rochester, School of Nursing, 601 Elmwood Ave, Box SON, Rochester, NY 14642, USA. jane_deluca@urmc.rochester.edu
Pediatrics
|June 29, 2011
Summary
Newborn screening for metabolic diseases causes parental distress. Improving communication and tailored counseling during diagnostic evaluations can reduce parental anxiety and enhance understanding of infant health outcomes.
Area of Science:
- Medical Genetics
- Pediatrics
- Public Health
Background:
- Abnormal newborn screening results for metabolic diseases cause significant parental distress.
- Diagnostic evaluations for less understood, newer disorders present unique challenges.
Purpose of the Study:
- To explore parental perceptions during diagnostic evaluations following abnormal newborn screening results.
- To identify areas for improving support for families undergoing newborn screening for metabolic disorders.
Main Methods:
- Qualitative content analysis of 48 open-ended interviews with 30 families.
- Interviews conducted before and/or after confirmatory test results for infants.
Main Results:
- Parents experienced shock and distress upon notification of abnormal results, with urgent information searches.
- Waiting for diagnostic results exacerbated anxiety; equivocal results created long-term health uncertainties.
- Despite information, some parents retained inaccurate ideas; most still valued newborn screening.
Conclusions:
- Newborn screening evaluations are highly stressful for parents.
- Enhanced communication, tailored counseling, and improved clinical services are needed.
- Comprehensive follow-up is crucial for infants with equivocal results.
