Untold stories: A qualitative investigation of patient and family experiences with congenital diaphragmatic hernia

In brief

This qualitative study explores the lived experiences of patients with congenital diaphragmatic hernia (CDH) and their caregivers, including families affected by neurodevelopmental impairment. The research examines perceptions of clinical and community support adequacy, filling a gap in understanding how CDH impacts daily functioning and what resources families need most.

• Patient and family perspectives on CDH are rarely studied, limiting clinicians' understanding of disease impact and support needs.
• The study explores lived experiences of CDH patients and caregivers, including those with neurodevelopmental impairment.
• Research examines adequacy of clinical and community support systems for CDH families.
• Understanding patient-reported outcomes is essential for improving comprehensive CDH care delivery.

Written by the GCMD Library team from the article.