Abstract 18113: Stress and Uncertainty as Perceived by Parents of Infants Discharged following the Norwood Operation
Caregivers of infants with complex single ventricle may experience significant stress related to uncertainty concerning their infant's heart condition and care needs following the Norwood operation. To better understand the stress experienced by these families, we assessed parental uncertainty stress and its relationship to patient characteristics/outcomes.
Methods: As part of a multicenter study of feeding practices and weight gain, parents completed the Mishel Parental Perception of Uncertainty scale (PPUS) pre-discharge (n=99) and at 4 wks (n=78) and 12 wks (n=63) post discharge (DC). The PPUS contains 4 subscales: Ambiguity, Lack of Clarity, Lack of Information (Info), and Unpredictability, with a 5-point Likert response format.
Results: With higher scores = higher uncertainty, PPUS scores were highest related to Unpredictability at all time points (mean/SEM= 3.14/.07 pre DC, 2.92/.07 at 4 wks, 2.81/.10 at 12 wks) and lowest related to Lack of Info (mean/SEM =1.67/.05, 1.68/.06 at 4 wks, 1.69/.06 at 12 wks). There was no significant change in PPUS total or subscale scores over time except Unpredictability which significantly decreased from pre-DC to 4 wks post DC (p <.01). PPUS scores post DC were not significantly correlated with hospital length of stay (HLOS), a potential surrogate for illness severity. Parents of infants fed orally only (n=40) had higher scores for Unpredictability at discharge than parents of infants with any/all tube feeding (n=59), p=.01. Higher weight gain between 4 to 12 wks was associated with lower Lack of Information score at wk 12, rs = -.39, p=.01.
Conclusion: Parents of infant survivors following Norwood operation experience persistent stress following DC, unrelated to HLOS, though perceived unpredictability decreases following DC. Parents of orally fed infants perceived greater unpredictability pre-discharge. Infants of more informed parents had better weight gain. Surveillance and increased communication of information, especially related to feeding in this study, may decreased parental uncertainty stress and assist parents in caring for their infants following Norwood operation.
- © 2010 by American Heart Association, Inc.