Stress, coping, protective factors, and quality of life in parents of infants with CHD: associations with state anxiety

Introduction: The Family Adaptation study, ancillary to the Single Ventricle Reconstruction Trial, examined the prevalence of anxiety and its associations with stress, psychosocial factors, and quality of life measures in parents of infants who underwent the Norwood procedure. Materials and methods: Two hundred and fifteen parents (143 mothers and 72 fathers) of 146 infants completed state anxiety (State Anxiety Inventory), stress, psychosocial, and quality of life measures post-Norwood, post-Stage II, and at a final visit (median child age: 14 months). Results: A substantial proportion of parents reported severe anxiety symptoms following the Norwood surgery, with 61% of mothers and 43% of fathers affected, decreasing over time to 46% and 33% by the final visit, respectively. Mothers’ average STAI-S scores were significantly higher than fathers’ post-Norwood (47.7 ± 13.2 versus 43.5 ± 11.8, p = 0.03), declining to 42.1 ± 13.0 versus 39.0 ± 9.6 (p = 0.14) at the final visit. Stress related to parenting a child with a serious illness was a stronger and more consistent predictor of mothers’ anxiety over time (highest R ² = 0.49 for emotional distress), whereas insufficient coping and fewer protective factors were greater and more consistent predictors for fathers (highest R ² = 0.40 for mastery and health). Quality of life was a consistent predictor of state anxiety for both mothers and fathers. Conclusion: Anxiety is elevated in parents of infants who underwent the Norwood procedure and is influenced by a complex interplay of stress, psychosocial factors, and quality of life. Addressing these factors is crucial for improving parents’ mental health, which in turn promotes the well-being of the entire family.