RPD308 - Parent Perspectives on Optimal Communication after Prenatal Diagnosis of Congenital Heart Disease

Key Message : Prenatal diagnosis of congenital heart disease (CHD) elicits countless uncertainties and, for most parents, psychological distress. Improving clinician communication about uncertainties could improve parental coping. This study uniquely identified how parents feel clinicians could help with the uncertainties introduced by prenatal diagnosis of serious illness.

Abstract:

Introduction: Prenatal congenital heart disease (CHD) diagnosis elicits uncertainties regarding diagnosis, prognosis, treatment options, and family impact and results in parental distress. With over half of all dialogue in initial fetal cardiology visits focusing on uncertainties, clinician communication can influence how parents cope. No prior study has gathered parental perspectives on what would be helpful in dealing with these uncertainties.

Objective: To gather parental perspectives on optimal clinician-parent communication about uncertainties after prenatal CHD diagnosis.

Methods: Parents who received a prenatal CHD diagnosis at two fetal cardiology centers between 2020 and 2023 were recruited to a web-based concept mapping project conducted using 4 sequential activities. 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?” Sorting facilitated grouping of statements gathered via brainstorming. Rating assessed each statement on importance and impact on parents using a Likert scale (1-5). After multidimensional scaling and hierarchical cluster analysis, interpreting examined the findings in small groups to identify future intervention targets.

Results: We enrolled 31 parents, including 23 mothers, 8 fathers, and 2 bereaved parents. Participants brainstormed 90 distinct statements and sorted them into 7 categories. The categories focused on conveying empathy, educating about the diagnosis, preparing families to face uncertainties, and providing resources and support. Parents rated the category “Empathy from Professionals” as most important, and “Empathy from Professionals” and “Realistic Expectations for after Birth” as most impactful.

Discussion: This study provides parent-based data on how communication could support parental coping with uncertainties introduced by prenatal CHD diagnosis. The results recommend the following components of clinician-parent communication as potential targets of future interventions: empathic and clear language use, discussion of uncertainties and realistic expectations, and availability of comprehensive resources and peer connections.

References: Harris KW, Brelsford KM, Kavanaugh-McHugh A, Clayton EW. Uncertainty of prenatally diagnosed congenital heart disease: a qualitative study. JAMA network open. 202;3(5):e204082.

Harris KW, Schweiberger K, Kavanaugh-McHugh A, et al. An Observational Study of Dialogue about Uncertainty in Clinician-Family Counseling Conversations Following Prenatal Diagnosis of Complex Congenital Heart Disease. PEC innovation. 2024;4:100265.

Woolf‐King SE, Anger A, Arnold EA, Weiss SJ, Teitel D. Mental health among parents of children with critical congenital heart defects: a systematic review. Journal of the American Heart Association. 2017;6(2):e004862.