Jessica Lyon, Natalie McAndrew, Alexis Geich, Tala AbuZahra, Steven R Leuthner, Joanne Lagatta, Krishna Acharya
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Voices of parents of children with major congenital anomalies admitted to the NICU: initial diagnosis, hospitalization, and discharge home.
Objective: To identify challenges vs. supports in the NICU and after NICU discharge for parents of an infant with a major congenital anomaly.
Study design: Qualitative study.
Results: We interviewed 18 parents (13 mothers, 5 fathers) whose children were admitted to our our NICU with a major congenital anomaly. In the NICU, challenges were navigating parenthood with significant impact on parent mental health, adjusting to changing healthcare providers, and need for better interdisciplinary communication. After discharge home, challenges were an initial adjustment to life without NICU monitoring, loss of NICU medical resources, burden of caregiving, continued healthcare utilization, and financial impact.
Conclusion: Key supports that were helpful to families were empathetic and consistent healthcare teams throughout their care journey, especially nurses; healthcare team members who went beyond medical care, consistent communication, parent engagement in NICU care, ongoing parent mental health support, and peer resources after discharge home.
期刊介绍：
The Journal of Perinatology provides members of the perinatal/neonatal healthcare team with original information pertinent to improving maternal/fetal and neonatal care. We publish peer-reviewed clinical research articles, state-of-the art reviews, comments, quality improvement reports, and letters to the editor. Articles published in the Journal of Perinatology embrace the full scope of the specialty, including clinical, professional, political, administrative and educational aspects. The Journal also explores legal and ethical issues, neonatal technology and product development.
The Journal’s audience includes all those that participate in perinatal/neonatal care, including, but not limited to neonatologists, perinatologists, perinatal epidemiologists, pediatricians and pediatric subspecialists, surgeons, neonatal and perinatal nurses, respiratory therapists, pharmacists, social workers, dieticians, speech and hearing experts, other allied health professionals, as well as subspecialists who participate in patient care including radiologists, laboratory medicine and pathologists.
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