Infant's difficult temperament characteristics predict poor quality of life in parents of infants with complex congenital heart defects post-cardiac surgery

Background & Aims: Parents of infants with complex congenital heart defects (CHD) often describe their infants as especially fussy, irritable, and difficult to sooth, which together with the illness caretaking demands, add to their stress. Little is known about how the behavioral style or temperament in the early months after discharge relates to parental quality of life. This study aimed to explore the associations between early infant temperament characteristics and parental quality of life in parents of infants with complex congenital heart disease. Methods: This descriptive, cross-sectional study, utilized data collected in a previously described multisite randomized clinical trial in the United States. Multivariable linear regression models were used to examine the associations of interest. Findings: Results demonstrated negative significant associations between most infant temperament subscales and parental quality of life. Higher scores on the Activity (β=-3.03, P=0.021), Approach (β=-1.05, P=0.021), Adaptability (β=-3.47, P=0.004), Intensity (β=-2.78, P=0.008), Mood (β= -4.65, P<0.001), and Distractibility (β=-3.36, P=0.007 were all significantly associated with lower parental quality of life scores, adjusting for parental dyadic adjustment, insurance type, number of medications, and number of unscheduled cardiologist visits. Conclusions: Parental perceptions of infant's difficult behavioral style or temperament characteristics appear to be associated with poorer quality of life in parents of infants with complex CHD post-cardiac surgery. Findings can be used in the screening process of families at potential risk of increased stress and poor illness adaptation and in the design of interventions to target parental mental health in this vulnerable patient population.