NICU by the Numbers

VON Members Report Increase in Family Involvement in the NICU

Issue 7 – March 2019


Ten principles of family-centered neonatal care, proposed in 1992(1), laid the groundwork for the idea that families play integral roles in neonatal intensive care units (NICU) and in quality improvement(2).

In 2009, Vermont Oxford Network added two questions to the Annual Member Survey to measure family involvement. One question asked whether the NICU has a formal family advisory council that includes families as members, meets regularly, and reports to NICU and/or hospital leadership. The second question asked whether families who experienced care in the NICU are involved as active team members in NICU quality improvement initiatives.


From 2009 to 2017, NICUs reporting having a formal family advisory council increased 9%, and inclusion of families as active team members in quality improvement increased 15%. Family involvement increased across all types of NICUs.

Family involvement increased in NICU


Howard Cohen, MD, and Marybeth Fry, M.Ed.

One only has to look back at the methodology described in Helen Harrison’s paper(1) to understand the importance of including families in implementing family centered care in our NICUs. Doctors Lucey and Silverman partnered with what was essentially a family advisory council to develop the principles that are so important to our care still today. Six of those ten principles start with the words “Parents and professionals should work together…”.

More recently, our understanding of how socioeconomic determinants impact health outcomes(3) and the unique experience and perspective that families bring reinforces the need for us to collaborate with them as equal partners in making improvements in our care.

Since that gathering of veteran NICU families and physicians in 1992, other organizations have developed and published resources to help NICUs develop both parent advisory councils and partnerships with parents in quality improvement work including the Institute of Medicine, the Institute of Patient- and Family-Centered Care, the Institute for Healthcare Improvement, the National Perinatal Association and the Agency for Healthcare Research and Quality. VON also has been a leader in this work, both in providing resources for NICUs and in including families as partners and faculty in leading its many collaboratives over the last twenty-five years(2).

NICU families play an essential role in improving the quality of our care and the health outcomes for our babies.  A strong, active family advisory council and the inclusion of families as active members of our quality improvement teams are two important ways to do that. Hopefully the improvements in  family involvement reported by VON members will continue.


  1. Harrison H. (1993).  The principles for family-centered care.  92(5):  643-650.
  2. Celenza JF, Zayack D, Buus-Frank ME, Horbar JD. (2017). Family involvement in quality improvement:  from bedside advocate of system advisor.  Clin Perinatol.  44 (3): 553-566.
  3. Braverman PA, Egerter Sa, Mockenhaupt RE. (2011).  Broadening the focus:  the need to address the social determinants of health.  Am J Prev Med.  40 (1S1): S4-18.
NBTN-7 Infographic

Your Data in Action

This report is made possible by Vermont Oxford Network members who voluntarily contribute data in a global effort to improve the care of high-risk newborns. VON members can view center-specific data by logging on to Nightingale and benchmark against this NICU by the Numbers report.

Editors: Erika Edwards, PhD, MPH

Analyst: Lucy Greenberg, MS