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Mothers' Experiences From Prenatal Diagnosis to Home Following Congenital Diaphragmatic Hernia: A Qualitative Study
Morena Terracciano1, Cristina Lumia2, Filippo Binda1
1Department of Healthcare Professions, Fondazione IRCCS Ca' Granda Ospedale Maggiore Policlinico, Milan, Italy.
Aim:
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.
Design:
A qualitative descriptive phenomenological study.
Methods:
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.
Results:
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.
Conclusion:
Among mothers represented in this study, informational, emotional, relational, and practical needs evolved from prenatal diagnosis to home care but remained closely interconnected.
Implications For The Profession And/Or Patient Care:
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.
Impact:
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.
Reporting Method:
The COREQ checklist guided reporting.
Patient Or Public Contribution:
Mothers contributed as study participants by sharing their experiences; they were not involved in study design, analysis, or manuscript preparation.