Advancing prenatal counseling and support for parents carrying a fetus with a congenital anomaly: A scoping review of key characteristics and practices

OBJECTIVE: To identify and synthesize key characteristics of prenatal counseling process and content, and support provided to parents carrying a fetus with a congenital anomaly. DATA SOURCES: A scoping review was conducted searching 2 electronic databases (PubMed and Embase) on January 23rd, 2025. STUDY ELIGIBILITY CRITERIA: We included original studies on prenatal counseling for fetal anomalies. Eligible populations included parents receiving a fetal anomaly diagnosis, individuals with a congenital anomaly, healthcare professionals involved in prenatal counseling, and patient representatives. Publications had to be in English, Dutch, or German. Reviews without original data were excluded. STUDY APPRAISAL AND SYNTHESIS METHODS: No quality assessment was performed. Extracted data were categorized into counseling process and content, and thematically analyzed. RESULTS: Of the 9028 articles screened, 43 articles met predefined eligibility criteria. The included articles, published between 1995 and 2024, encompassed a range of perspectives, including those of parents, individuals with a congenital anomaly, healthcare professionals, and representatives from patient advocacy groups. Findings were organized into 2 main categories: prenatal counseling process and content. Process themes included: (1) Communication, (2) Multidisciplinary counseling, (3) Shared decision-making, (4) Continuity, (5) Accessibility, (6) Psychosocial support, and (7) Counseling prerequisites. Content themes were: (1) Informational content, and (2) Delivery of information. CONCLUSION: Results underscore the necessity of a holistic approach to prenatal counseling for parents after fetal diagnosis, and highlight the importance of integrating psychological care alongside information delivery.