Stories of Early Experiences of Nursing Care in the Neonatal Intensive Care Unit from Parents' Whose Infants are born with Congenital Diaphragmatic Hernia




Lusney, Nadine

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The birth of a child diagnosed with congenital diaphragmatic hernia (CDH) involves significant intensive care at the beginning of life and the need for surgery. Parents’ experiences during the acute phase of hospitalization for a critically ill infant not born premature is currently limited in the literature; in particular, there is no literature describing parents’ experiences of nursing care for having a infant with CDH in the Neonatal Intensive Care Unit (NICU). Using narrative inquiry this study explores stories of parents’ early experiences of nursing care in the NICU for an infant born with CDH. A thematic analysis revealed a main overarching theme of “not knowing” with three interrelated subthemes related to parents’ need for information and open communication; participation, power and partnership; and nursing presence to transition from not knowing to knowing their infant. The findings from this study suggest that parents want to be recognized as key members within the multidisciplinary team and that the nurse has the ability to facilitate aspects of care to impact parents positively or negatively. Implications for practice focus on supporting parents through evolving empowerment and participation in the care of their infant.



NICU, Neonatal Intensive Care Unit, Narrative Inquiry, Congenital Diaphragmatic Hernia, Parents' Experiences