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.