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Assessment and Evaluation of the High Risk Neonate: The NICU Network Neurobehavioral Scale
Published on: August 25, 2014
Being a "Good Parent" to a NICU Infant With a Major Congenital Anomaly
Melissa K Uveges1, Jill B Hamilton, Britt F Pados
1William F. Connell School of Nursing, Boston College, Chestnut Hill, Massachusetts (Dr Uveges); Nell Hodgson Woodruff School of Nursing, Emory University, Atlanta, Georgia (Dr Hamilton); Infant Feeding Care, Wellesley Hills, Massachusetts (Dr Pados); School of Nursing, Johns Hopkins University, Baltimore, Maryland (Mr Thayer); Children's National Health System, Washington, District of Columbia (Dr Hinds); Department of Pediatrics, The George Washington University, Washington, District of Columbia (Dr Hinds); and Conway School of Nursing, The Catholic University of America, Washington, District of Columbia (Dr Nolan).
Insights
Parental decision-making beliefs for infants in the neonatal intensive care unit (NICU) are largely similar, whether the diagnosis was prenatal or postnatal. However, parents receiving a postnatal diagnosis prioritized their child's quality of life more.
Area of Science:
- Neonatal Intensive Care Unit (NICU) care
- Pediatric congenital anomalies
- Parental decision-making
Background:
- Up to one-third of infants with congenital anomalies require NICU hospitalization in the US.
- Parental decision-making priorities may differ based on the timing of their infant's diagnosis (prenatal vs. postnatal).
Purpose of the Study:
- Compare the ranked importance of decision-making beliefs for parents of infants with prenatal versus postnatal congenital diagnoses.
- Explore how parents describe their decision-making beliefs in the NICU context.
Main Methods:
- Employed a cross-sectional, sequential mixed-methods pilot design.
- Quantitative data collected via the Good Parent Ranking Exercise; qualitative data from interviews.
- Analyzed data using Maximum Difference Scaling/Hierarchical Bayes estimation and content analysis.
Main Results:
- Forty mothers completed the ranking exercise; 20 completed interviews.
- Four of the top 5 ranked parenting beliefs were consistent across prenatal and postnatal diagnosis groups.
- Mothers with postnatal diagnoses ranked "focusing on my child's quality of life" higher; high concordance found between groups.
Conclusions:
- Decision-making beliefs for NICU parents are largely similar regardless of prenatal or postnatal diagnosis timing, but subtle differences exist.
- Findings highlight the need for NICU nurses to acknowledge potential variations in parental priorities.
- Future research should investigate diverse parent groups and effective strategies to support NICU parental decision-making.
Background:
In the United States, up to one-third of infants with a congenital anomaly require neonatal intensive care unit (NICU) hospitalization. Parents of these infants may have different decision-making priorities, which may be influenced by the timing of the infant's diagnosis.
Purpose:
(1) To compare the ranked importance of decision-making beliefs for parents of infants who received a prenatal versus postnatal congenital diagnosis and (2) explore how parents describe their decision-making beliefs.
Methods:
A cross-sectional, sequential mixed-methods pilot design was applied to collect quantitative data using the Good Parent Ranking Exercise and further explore parents' decision-making beliefs through qualitative interviews. Maximum difference scaling/hierarchical Bayes estimation and content analysis were used to analyze the quantitative and qualitative data, respectively.
Results:
Forty mothers completed the Good Parent Ranking Exercise and 20 mothers completed qualitative interviews. Four of the top 5 ranked parenting beliefs were shared by mothers in the prenatal and postnatal groups. Mothers in the postnatal group ranked "focusing on my child's quality of life" higher. Qualitative interviews revealed that previously identified decision-making beliefs were consistent in this NICU parent population, with 1 additional belief identified. Mixed-methods analysis revealed high concordance between the prenatal and postnatal groups.
Implications For Practice:
NICU nurses need to know that decision-making beliefs for parents who receive a prenatal versus postnatal congenital diagnosis, while largely similar, may have differences.
Implications For Research:
Future research should explore decision-making beliefs in demographically diverse parent groups (ie, fathers, partnered vs nonpartnered couples) and effective strategies for promoting NICU parents' decision-making beliefs.
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