Mothers' Experiences From Prenatal Diagnosis to Home Following Congenital Diaphragmatic Hernia: A Qualitative Study.

Authors

Morena Terracciano, Cristina Lumia, Filippo Binda, Chiara Grossi, Barbara Sappa, Anastasia Giri, Nicola Persico, Antonella Nespoli

Published in

Nursing open. Volume 13. Issue 10. Pages e70921.

Abstract

To explore the experiences of mothers who completed the care pathway following a diagnosis of congenital diaphragmatic hernia and identify implications for nursing and midwifery practice.
A qualitative descriptive phenomenological study.
Semi-structured interviews were conducted in February 2023 with 21 mothers who had completed the congenital diaphragmatic hernia care pathway between 2019 and 2022 at an academic referral hospital for fetal surgery in Northern Italy. Women whose pregnancy was not carried to term, those who experienced fetal or neonatal loss, and those receiving ongoing psychological support were not included. Data were analysed thematically using a descriptive phenomenological approach.
Five themes were identified across diagnosis, decision-making, specialised care, childbirth, and the postnatal transition home. Mothers experienced the pathway as interconnected transitions characterised by uncertainty, repeated adaptation, and changes in the maternal role. Specialist counselling improved clarity but did not eliminate prognostic uncertainty. Midwives emerged as central relational figures during childbirth, while mothers highlighted communication, parental involvement, continuity, and preparation for discharge.
Among mothers represented in this study, informational, emotional, relational, and practical needs evolved from prenatal diagnosis to home care but remained closely interconnected.
Nursing and midwifery priorities may include reinforcing complex information, preparing women for childbirth and possible neonatal separation, facilitating parental involvement, and supporting readiness for home care.
The study addresses limited understanding of how maternal needs evolve across the congenital diaphragmatic hernia care continuum. Uncertainty, adaptation, and changes in the maternal role persisted across successive transitions. Findings may inform nursing, midwifery, and multidisciplinary support across fetal, maternity, neonatal, and community care.
The COREQ checklist guided reporting.
Mothers contributed as study participants by sharing their experiences; they were not involved in study design, analysis, or manuscript preparation.

PMID:
42854104
Bibliographic data and abstract were imported from PubMed on 10 Oct 2026.

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