Neonatal General
Neonatal General 3: Ethics, Parents Take the Lead
Jessica T. Fry, MD (she/her/hers)
Attending Neonatologist, Assistant Professor of Pediatrics
Ann & Robert H. Lurie Children's Hospital of Chicago
Chicago, Illinois, United States
To assess perspectives of parents of infants discharged from a children’s hospital NICU on family support during the NICU stay and suggestions for improvement.
Design/Methods: We performed a prospective, descriptive study of parents with children discharged from a level IV children’s hospital NICU between June – August 2020. At enrollment, parents completed a brief demographic questionnaire. Approximately 2 weeks after NICU discharge, parents answered semi-structured questions about both their received and desired family support via phone interview or online survey. Transcripts and survey answers were coded by study team members using NVivo software and assessed for parental themes of family support with conventional content analysis.
Results:
Characteristics of study parents and their infants are listed in Table 1. When asked to describe types of support they encountered or desired during the NICU stay, parents reported numerous specific items. Six broad categories of support emerged: encouragement and assistance from friends or family outside of the NICU setting, material assistance provided by or through the NICU, communication and education provided by NICU staff, formal programs organized for parent support, relationships with NICU staff members, and connections made with other NICU parents. Representative quotations are presented in Table 2. Parents also identified several areas for improvement, including communication, orientation to unit resources, preparation for discharge, availability of primary nurses, availability of mental health resources, development of a NICU parent community, and enhanced support when parents not able to be at bedside. Parents highlighted experiencing compounded social isolation during the COVID-19 pandemic.
Conclusion(s): Enhanced in-hospital support of NICU parents is needed. This is especially crucial given the ongoing pandemic and its associated mental health crisis. This study categorizes the various types of support valued by parents, through formal programs and informal interactions, and serves as a framework for NICUs looking to make enhancements to family support. By partnering with families through research and quality improvement, NICU teams can be guided towards providing care that is truly family-centered. 
