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Patient Experience Case Study - March of Dimes
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Building a Culture of Understanding with a NICU Family Support Program

What was the challenge, opportunity or issue faced?

Having an infant hospitalized for any length of stay in a neonatal intensive care unit (NICU) can be a frightening experience, and can quickly overwhelm even those with the most intact coping mechanisms. The NICU experience, for most families, begins with an incredible amount of new information, spoken in what seems like a coded language. Many families experience a rapid and unexpected change in their routine, which typically includes a flurry of phone calls to family members, baby sitters, insurance companies and employers. Over time, families have an opportunity to build a routine and establish a sense of normalcy during the hospitalization.

However, for families whose baby will be in the NICU for a shorter stay, defined here as two weeks or less, that feeling of normalcy rarely has the opportunity to gain a foothold. The vast amounts of new information, terminology, equipment and rotation of staff can be very challenging. These challenges, combined with the worry of outside stressors such as childcare, work, family, household, transportation, finances, and more can become overwhelming. In the words of one shorter stay parent, "It was like I had taken a crash course in medical school and felt the pressure to comprehend something that was incomprehensible."

What did you do to address it?

Beginning in 2009, the March of Dimes NICU Family Support Program held focus groups with families whose baby(ies) had been hospitalized in the NICU, interviewed NICU staff and March of Dimes NICU Family Support Program Coordinators, and reviewed literature to understand how to best support shorter stay families. As a result, March of Dimes rolled out the following initiatives:

  • In 2014, a parent education booklet was released specifically for shorter stay families titled, "In the NICU for a Shorter Stay." The goal of this booklet is to provide shorter stay families with the necessary information they need to care for their baby in the NICU, help them prepare quickly for the transition home and continue to care for their baby once they are at home. This booklet is shorter and contains more targeted information than the booklet given to families who are in the NICU for a longer time, whose babies typically have more complex needs.
  • In 2012, a professional development training was launched for NICU providers titled, "Shorter Stays in the NICU: Impact and Implications for Care." This training focuses on the importance of empowering, educating and supporting shorter stay families in the NICU.

Through the NICU Family Support program, an ongoing focus on building a culture of understanding has been championed to help validate the shorter stay family's experiences in the NICU and to improve their patient experience.

What outcomes were achieved?

Through these family and staff initiatives, a shift in attitudes and support for shorter stay families has been seen across the country.

Since the parent education booklet's launch in March, 2014, over 55,000 families have received this tailored educational resource. By directly addressing what focus group families reported as a source of dissatisfaction, we believe the experience of these 55,000 families was improved by having educational materials tailored to their needs.

In addition, the professional development training has been delivered in over 30 hospitals, local and regional symposiums, and at the 32nd Annual Educational Conference for the National Association of Neonatal Nurses in 2016. Over 115 written comments have been collected from workshop evaluations since 2012 showing that many nurses demonstrated increased understanding of shorter stay families' perspective and needs. The evaluation comments range in theme from an increased understanding of shorter stay families' needs, being more aware of the need to support this NICU sub-group, and the desire to improve communication, education and discharge planning.

By educating shorter stay families and the staff who work with them in the NICU, we have been able to impact change in a meaningful and sustained manner.

About March of Dimes

March of Dimes fights for the health of all moms and babies. We work to support families in the NICU in a number of ways including through the March of Dimes NICU Family SupportĀ® program (MODNFS) and through the new My NICU BabyTM App. Established in 2001, MODNFS seeks to improve families' NICU experience through an established set of resources designed to advance communication, collaboration and strengthen the partnership between families, the health care organization and the March of Dimes. Learn more at marchofdimes.org/nicufamilysupport.

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