Lyon Jessica, McAndrew Natalie, Geich Alexis, AbuZahra Tala, Leuthner Steven R, Lagatta Joanne, Acharya Krishna
Department of Pediatrics, Medical College of Wisconsin, Milwaukee, WI, USA.
University of Wisconsin Milwaukee, School of Nursing, Milwaukee, WI, USA.
J Perinatol. 2025 Mar 5. doi: 10.1038/s41372-025-02255-8.
To identify challenges vs. supports in the NICU and after NICU discharge for parents of an infant with a major congenital anomaly.
Qualitative study.
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.
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.
确定患有重大先天性异常婴儿的父母在新生儿重症监护病房（NICU）期间及出院后面临的挑战与获得的支持。
定性研究。
我们采访了18位父母（13位母亲，5位父亲），他们的孩子因重大先天性异常入住我们的新生儿重症监护病房。在新生儿重症监护病房，挑战包括为人父母面临重大影响其心理健康的情况、适应不断更换的医疗服务提供者以及需要更好的跨学科沟通。出院回家后，挑战包括最初适应没有新生儿重症监护病房监测的生活、失去新生儿重症监护病房的医疗资源、护理负担、持续的医疗保健利用以及经济影响。
对家庭有帮助的关键支持包括在整个护理过程中富有同情心且始终如一的医疗团队，尤其是护士；超越医疗护理范畴的医疗团队成员、持续沟通、父母参与新生儿重症监护病房护理、持续的父母心理健康支持以及出院回家后的同伴资源。
