Mental health care for parents of babies with congenital heart disease during intensive care unit admission: Systematic review and statement of best practice

Introduction: Congenital heart disease (CHD) is one of the most common causes of infant admission to pediatric intensive care and is associated with profound psychological stress for mothers, fathers and their infants. Intensive care unit admission represents an opportunity to offer evidence-based strategies to prevent or minimize severe psychological distress and promote secure bonding and attachment, alongside high-quality infant medical care. Objectives: We aimed to identify, synthesize and critically appraise published evidence on the efficacy and cost-effectiveness of mental health interventions delivered in neonatal, pediatric or cardiac intensive care units for parents of infants with CHD. A secondary goal was to develop recommendations for advancing health policy, practice and research in the field. Methods: In accordance with a prospectively registered protocol (CRD42019114507), six electronic databases were systematically searched for studies reporting results of a controlled trial of a mental health intervention for parents of infants aged 0-12 months with a congenital anomaly requiring intensive care unit admission. To maximize generalizability of results, trials involving infants with any type of structural congenital anomaly requiring surgery were included. Outcomes included intervention type, process, efficacy, and cost-effectiveness. Results: Across all forms of congenital anomaly, only five trials met inclusion criteria (four in CHD, one in gastrointestinal malformation). All interventions engaged parents face-to-face, but each had a distinct therapeutic approach (parent-infant interaction and bonding, early pediatric palliative care, psycho-education, parenting skills training, and family-centered nursing). Four of the five trials demonstrated efficacy in reducing maternal anxiety, although the quality of evidence was low. Positive results were also found for maternal coping, mother-infant attachment, parenting confidence and satisfaction with clinical care, as well as infant mental (but not psychomotor) development at 6 months. Mixed results were found for maternal depression and infant feeding. No evidence of efficacy was found for improving parent, infant or family quality of life, physical health or length of infant hospital stay, and there were no data on cost-effectiveness. Conclusions: Stronger evidence for the efficacy of mental health interventions to buffer the effects of intensive care unit admission for parents of infants with CHD is urgently needed. Robust, high-quality trials are lacking, despite the established need and demand, and health policies prioritizing parent mental health care in the context of early childhood adversity are needed.