Parental Perspectives on Prenatal Counseling and Communication at the Time of Initial Evaluation and Diagnosis of Congenital Heart Disease

Objective: This study aimed to investigate essential domains of prenatal counseling and communication in the specialized obstetric setting at the time of initial evaluation and diagnosis of congenital heart disease (CHD), including suggestions to improve parental preparation and support. Study Design: Qualitative data were collected using crowdsourcing methods. Thirty-two parents of children across the United States with a prenatal diagnosis of CHD responded to 37 open-ended questions over six-months. Responses reflecting experiences with ultrasound evaluation of the fetus or interactions with maternal-fetal medicine (MFM) specialists were coded/analyzed using a thematic analytic approach. Results: Five themes representing domains of prenatal counseling and communication were identified: (1) quality of initial communication including clarity of information, sensitivity/empathy, and opportunities for engagement and questions; (2) laying the foundation for emotional adjustment and coping through validating and normalizing emotional responses and providing multidisciplinary psychosocial support; (3) early provision of trusted resources, including educational resources, guidance on financial planning, and peer/community connections; (4) support for managing referrals and follow-up appointments by guiding parents through scheduling procedures and establishing streamlined provider communication; and (5) support for navigating next steps in diagnostic care, including setting clear expectations regarding provider roles and empowering parents in information-seeking and advocacy. Conclusion: By investigating the experiences of parents in the specialized obstetric setting at the time of initial evaluation of CHD, this study highlights critical concepts in prenatal counseling and communication and underscores actionable steps to enhance parental preparation and support. Study results emphasize need for standards of care and training models that apply a person-centered, trauma-informed, socioecological approach to prenatal counseling delivered by MFM specialists. Results underscore the importance of incorporating multiple disciplines into prenatal care, including psychosocial providers and care coordinators, to enhance parental support, understanding, and preparedness and to mitigate stress and trauma during an early and ambiguous time.