Management of Congenital Diaphragmatic Hernia (CDH) care: Addressing what matters to patients and their families?

Abstract

Despite advances in care, Congenital Diaphragmatic Hernia remains a complex and challenging condition to manage and is often associated with long term morbidity. Families are required to navigate considerable uncertainty, challenges in prognostication and communication, and must adapt to an evolving clinical trajectory. This review addresses considerations and practical tips for healthcare professionals to improve the family and patient experience from diagnosis to adult care, from the perspective of clinicians and CDH families. This paper emphasizes the importance of including those with lived experience with CDH in defining topics of priority in research and in clinical and support interventions.

Keywords: Congenital diaphragmatic hernia; Development. parental perspectives; Follow-up; Neonates.