Objective: To describe stress, coping, and outcomes for parents of infants with single ventricle congenital heart disease (SVCHD). Survival for one of the most complex forms of congenital heart disease, SVCHD, has improved dramatically. Little is known about family stress, coping, and adaptation following the diagnosis of SVCHD.

Methods: A descriptive, repeated-measures design using survey techniques is utilized. Parents of affected infants complete study measures at three time points (A-4-6 weeks, B-4-6 months, C-13-15 months of infant age).

Results: 87 mothers and 43 fathers have participated; time A=90, B=65, C=35. Parents were 19.7 to 52.9 years old. Nearly half were first-time parents. Mothers reported higher post-traumatic stress disorder symptoms, greater impact on the family, more frequent stressful experiences, greater use of coping skills, and lower individual well-being than fathers (t-test, p<0.05). Family function was in the clinical range for 13% of mothers and 10% of fathers. High risk of stress-related illness due to cumulative life changes was present for 24% of mothers and 30% of fathers. Perceptions of stress for both parents decreased from time A to time C, however family resources for management of stress also decreased (ANOVA with Tukey post-hoc comparisons, p<0.05).

Conclusion: Parents demonstrate a complex response to the stress of SVCHD in an infant. Mothers and fathers exhibit different patterns of responses. Most families adapt well over time, however resources for managing the stress of chronic illness may decline. Plans for psychosocial support should be in place to help parents face this challenge.