The NICU Family Advisory Board

March 27, 2019 Very few expectant parents ever anticipate that their child will need admission to the neonatal intensive care unit after birth. However, when a NICU transport and admission is required, it is very often a traumatic and frightening experience for the entire family. UPMC Children’s operates a level IV NICU and routinely admits patients from up to four hours’ distance, many of whom arrive via helicopter. The NICU at UPMC Children’s is a bustling unit with more than 1,000 admissions each year, many for extended stays of several months.

To foster a continually evolving and improving patient and family experience for those who are in need of a NICU admission, the NICU Family Advisory Board (FAB) was created in 2014. Its creation was spearheaded by NICU Quality Improvement Program Manager and Family Experience Program Manager Mary Jo MacPherson, BSN, RN, CBC, as a means of providing evidence-based best practice patient experience for visiting families. In addition to her roles at UPMC Children’s, Mrs. MacPherson also is the quality improvement manager for the Children’s Hospitals Neonatal Collaborative (CHNC).

Entering its fifth year of operation, the FAB consists of a rotating mix of individuals that includes Mrs. MacPherson, two NICU floor nurses, and NICU alumni parents and grandparents, along with individuals from the surrounding Pittsburgh communities.

The board meets monthly to discuss and provide firsthand perspectives on unit policies, and it helps guide the implementation of family-centered changes to procedures and practices. Every other month there are parent-to-parent events where board members or past NICU alumni will visit and interact with current families on the unit.

“These peer-to-peer support opportunities are incredibly helpful for families. They are able to visit with and interact with people who have gone through a similar experience with their child and come out the other side. If a family has been in the NICU for several months, they can begin to feel as though they will never be going home. Having the chance to interact with NICU “Alumni” families can be very beneficial emotionally,” says Mrs. MacPherson.

Successes and Policy Changes Spurred by the FAB

Mrs. MacPherson indicates that since the FAB’s founding, its members have been involved with helping shape or change approximately 17 different unit policies or equipment changes through the feedback process, and have offered more than 40 parent-to-parent events in the NICU for current inpatient families.

The projects have run the gamut from providing feedback when the NICU expanded from 33 to 55 beds in 2014, to parent involvement in a central line infection prevention and handwashing protocol. The FAB also has advised on various NICU policies, including allowing both parents to remain at their baby’s bedside 24/7.

Mrs. MacPherson also points out what she sees as the FAB’s most significant contribution to date: the change in parent sleeping policy at the bedside. “It used to be the case that only one parent was allowed to sleep over in their baby’s room. Usually it would be the mother, and the father had to leave and sleep elsewhere in the hospital. Within the first two months of the FAB’s existence, they were instrumental in helping to get this policy changed to allow both parents to remain bedside at night if they wish,” says Mrs. MacPherson.

Contributing to the QI Process

Quality improvement initiatives are a huge part of the day-to-day operation of virtually every NICU in the United States. At UPMC Children’s, the FAB has taken an active part of several QI projects that have had tremendous success in improving clinical outcomes and other aspects of the NICU experience for patients, parents, and staff.

“Our Breastmilk = Medicine project in the NICU has increased the percentage of new moms breastfeeding at the time of discharge from 45 percent to 76 percent during its first month. In the more than five years since its inception, the average rate of mothers breast feeding at discharge has been maintained at 82 percent,” says Mrs. MacPherson.

NICU Family Advisory Board Goals

• Improve family-centered care through solicitation of feedback on new projects, policies, and procedures from NICU alumni parents.
• Provide parent-to-parent support for current NICU families from individuals with a previous NICU stay and discharge.
• Support quality improvement initiatives within the UPMC Children’s NICU and promote the NICU’s community presence and outreach work.