Abstract 2846: Parental Perception of Uncertainty and Stress following the Norwood Operation in Infants with Single Ventricle
Caregivers of infants with complex single ventricle (SV) may experience significant stress related to uncertainty concerning their infant’s heart condition and care needs. To better understand the stress experienced by these families, we assessed parental uncertainty, its relationship to patient characteristics, and compared to parents of premature infants (premies). As part of a multicenter study of feeding practices, parents of 52 neonates with SV completed the Mishel Parental Perception of Uncertainty scale (PPUS) prior to hospital discharge following the Norwood operation. The PPUS contains 4 subscales: Ambiguity, Lack of Clarity, Lack of Information (info), and Unpredictability. Mean age at surgery was 5.3 days (range 1–18) and mean weight 3.2 kg (range 2.2–3.8). Median hospital length of stay (HLOS) was 24 days. Mean O2 saturation at discharge was 83% (range 72–94%). Primary feeding method at discharge was oral in 19, tube in 13, and combination of oral+ tube in 20. Thirty six were discharged with a daily home surveillance (HS) program.
Results: With higher scores = higher uncertainty, PPUS scores were highest related to unpredictability (mean/SD = 3.13/0.70) and lowest related to lack of info (mean/SD = 1.65/0.51). Overall PPUS scores in parents of infants with SV were significantly lower than norms reported for parents of premies, especially related to lack of info, p<.01. PPUS scores were not significantly correlated with infant age (r=.036), O2 saturation (r=.104), or HLOS (r=.117), Parents of infants with oral + tube feeding tend to have lower PPUS scores (mean 67.2) than infants fed by tube alone (mean 73.1). Mean PPUS scores from parents of infants discharged with daily HS (69.9) were not significantly different than parents without HS (71.4).
Conclusion: Parents of infants with SV experience stress especially related to the unpredictability of their infant’s symptoms and outcome. SV parents perceive less uncertainty, especially related to lack of info regarding their infant’s diagnosis and illness severity than parents of premies. Alternative feeding strategies and home monitoring, (including monitoring associated with this study), may assist parents in dealing with the uncertainty of their child’s illness following the Norwood operation.