Parent Perspectives on Optimal Communication About a New Prenatal Diagnosis of Complex Congenital Heart Disease: A...

Prenatal diagnosis of congenital heart disease (CHD) causes parental distress, at least in part due to uncertainties regarding the diagnosis, prognosis, treatment, and family impact. In initial fetal cardiology consultations, over half of dialogue focuses on uncertainties, and clinician communication can influence how parents cope. No prior study has gathered parental perspectives on what would be helpful when communicating about uncertainties in these initial conversations. The objective of this study was to gather parental perspectives on optimal clinician-caregiver communication about uncertainties after prenatal CHD diagnosis. Parents who received a prenatal diagnosis of CHD at one of two fetal cardiology centers were recruited to participate in a web-based concept mapping project conducted using four sequential activities. First, brainstorming collected responses to the prompt: "What are some things the team can do or say to help parents with the things that are not yet known?" Second, sorting grouped similar statements gathered during brainstorming. Third, rating assessed each statement in terms of perceived parental importance and impact using a Likert scale. Finally, after multidimensional scaling and hierarchical cluster analysis, parents participated in small group interpreting sessions, during which the findings were examined to identify targets for future intervention. We enrolled 31 parents, including 23 mothers, 8 fathers, and 2 bereaved parents. All received a CHD diagnosis between 2020 and 2023. Average participant age was 33 years (interquartile range: 5 years). Participants brainstormed 108 statements; they then sorted 90 distinct statements into 7 categories, called clusters. Clusters included topics of conveying empathy, educating about the diagnosis, preparing families to face uncertainties, and providing resources and support. Overall, the cluster, "Empathy from Professionals" was rated most important. "Empathy from Professionals" and "Realistic Expectations for after Birth" were rated as most impactful. This study identifies parent-prioritized, actionable communication strategies for addressing uncertainty after prenatal CHD diagnosis. Parents emphasized the importance of empathic communication, anchoring uncertainty within known and controllable factors, realistic expectations, and access to practical and peer support. These findings provide potential context-specific intervention targets for optimizing clinician-caregiver communication in fetal cardiology.