Parental experiences and support needs following a prenatal diagnosis of congenital heart disease: a qualitative study across the continuum of care in Turkey

Abstract

Congenital heart diseases (CHDs) are the most common fetal anomalies, presenting parents with a difficult decision regarding whether to continue or terminate the pregnancy. This study explores the perspectives of parents who chose to continue their pregnancies after a CHD diagnosis, aiming to understand their decision-making processes and the subsequent experiences. Methods Between January and November 2024, 30 families with children diagnosed with CHD were interviewed. Thematic analysis was performed on the interviews, categorised into four stages: Prenatal Screening to Confirmative Diagnosis, Continuation of Pregnancy to Birth, Birth to Postnatal Period and Raising a Child with CHD. Parent-child bonding and marital quality were evaluated using psychiatric assessment questionnaires. Results Thematic analysis revealed that prenatal diagnosis often triggered emotional distress, with decisions influenced by factors like physician input, religious beliefs and emotional bonding with the fetus. During birth and treatment, unexpected complications, particularly ICU-related challenges, affected parent-child bonding and emotional well-being. In childhood, ongoing medical needs led to developmental concerns and heightened parental vigilance. Throughout all stages, communication quality with healthcare providers and system-level gaps, such as poor referral structures, shaped family experiences. CHD also impacted family dynamics, reproductive decisions and was compounded by societal stigma and a lack of awareness. Conclusion CHD requires lifelong care from healthcare professionals and parents. The study highlights the need for improvements in care, emphasising a holistic approach that addresses both parental and child needs. Key recommendations include developing structured referral systems, promoting shared decision-making, integrating parent counselling and establishing support mechanisms to reduce parental stress. Focusing on these areas could improve patient outcomes and family care experiences.