About Our Work
“Parents and family caregivers are not visitors.”
Advocacy Work:
Our FCC Taskforce Advocacy Committee Co-Chaired by Kerri Machut, MD and Nicole Nyberg, NNP submitted a resolution to the AAP Leadership Conference titled “Parents and Family Caregivers are Integral Members of the Patient Care Team” (#36) supported by the Section on Neonatal-Perinatal Medicine (SoNPM). Click below to read supportive comments from Family Partners and multidisciplinary healthcare professionals:
Family-Centered Care in the NICU is a cost-effective intervention approaching healthcare grounded in information-sharing, participation, collaboration, respect, and dignity. Families are considered integral members of the care team and primary decision-makers for their infants. Though research points to FCC improving outcomes for infants and families, these practices are not yet ubiquitous across healthcare settings in the U.S.
Parents are considerably impacted when a baby is born sick or premature, and thus experience a lack of bonding which can exacerbate developmental delays and the mental health and well-being of the family unit. Families of color and lower economic status are disproportionately affected by the complex traumas and experiences of a NICU stay, thereby perpetuating the impact of social determinants of health and structural racism in healthcare.
Local NICU policies in relation to FCC have been dictated without significant collaboration with affected families. The FCC Taskforce is driving change by collaborating with our network of Family Partners diverse in their infants’ gestational ages & medical diagnoses, geographical locations, backgrounds, and lived experience. Leveraging our collective skills, knowledge, and power, our aim is to create a gold standard of FCC in the NICU and explore FCC practices at a scale that exceeds prior studies.
Quality Improvement Projects
2024 Quality Improvement Work
2024 QI Work is supported by an independent educational grant from Chiesi USA.
In 2024, we are piloting an assessment tool that will allow us to create NICU FCC Measures in seven categories:
1. Framework
2. Family Support
3. Family Integration into Care
4. Family Integration into QI & Processes
5. NICU Environment
6. Staff Education
7. Balancing
Our journey to developing this assessment tool has been a collaborative effort, spanning 17 months of dedicated work by FCC Taskforce leadership. We have worked tirelessly in partnership with our diverse Executive Council of family partners and multidisciplinary healthcare professionals to ensure its effectiveness and have included researchers along the way to review and further validate our efforts.
Stanford Impact Labs
The FCC Taskforce has been awarded a Stanford Impact Labs Seed Partnership and is collaborating with NICU Parent Network to use quantitative and qualitative research methodologies to create an FCC standard of care and explore FCC practices at a scale that exceeds prior studies. This work will enable us to develop (1) first-ever FCC benchmarks in the NICU, and (2) identify ways to overcome barriers to FCC implementation.
Check out our project:
Optimizing the Delivery of Family-Centered Care in the Neonatal Intensive Care Unit (NICU)
2023 Quality Improvement Work
2023 QI Work is supported by an educational grant from Genentech.
We are thrilled to share that among the 22 global NICUs participating in our 2023 quality improvement work, we exceeded our goals by increasing the percentage of units with an active NICU-specific FCC Committee from 18% to 59%, and the percentage of NICUs with an active Family Partnership Council from 18% to 45% in just 12 months!
Units who had the most success consistently participated in small group benchmarking opportunities where they were encouraged to share their barriers to implementing FCC practices and brainstorm strategies for overcoming them, and attended our free educational webinars while encouraging their colleagues to do the same.
41% increase in
units with an active
NICU-specific
FCC Committee
27% increase in
units with an active
Family Partnership Council
"Thank you for all your hard work in engaging NICU teams all around the country on this Taskforce! Our unit has been able to share our FCC team's efforts as well as availability of rich information-sharing that has helped us refine our family-centered care processes in our NICU."
— Sangeeta, California
Testimonials
“Our unit in Israel joined the FCC Taskforce a year and a half ago. We have attended general and small group sessions in which we have received mentoring from leading figures in the field of FCC. We have learned a lot! We now have a better understanding of the core elements of FCC and are learning about different and practical ways we can implement FCC in our unit. We could not have made this possible without the support of our mentors, and we are very grateful for them and for this amazing model of support."
— Rafi, Tel Aviv
"I am so proud to be on this Taskforce and to see the widespread change that is happening in units. I feel very fortunate to have the opportunity to connect with colleagues who share my passion for FCC. I learn something new in every webinar!"
— Maria, Texas
FCC Taskforce Office Hours
The FCC Taskforce holds monthly Office Hours to discuss challenges around implementing FCC practices and brainstorm strategies for overcoming them. Office Hours are facilitated by Healthcare & Family Partners from our Executive Council and include a variety of topics relevant to beginning or strengthening FCC in the NICU. Click here to register, it’s free to join!