UNCW and Feeding Matters Launch $240,000 Consortium

A team at Feeding Matters, in partnership with the University of North Carolina Wilmington, has been approved for a $241,000 funding award through the Eugene Washington PCORI Engagement Awards (Engagement Awards) program, an initiative of the Patient-Centered Outcomes Research Institute (PCORI). The funds will support the launch of the Family-Centered Pediatric Feeding Disorder (PFD) Research Consortium.   

UNCW School of Nursing Associate Professor Hayley Estrem will co-lead the engagement project with Feeding Matters Chief Executive Officer Jaclyn Pederson. Also contributing to the research team are associate professors from the UNCW School of Nursing, Stephanie Duea and Anka Roberto. 

PFD is impaired oral intake that is not age-appropriate and is associated with medical, nutritional, feeding skill, and/or psychosocial dysfunction. Research on PFD is still considered an emerging field, and while there has been great progress in recent years on the advancement of research, it still lacks the inclusion of the patient and family voice.  

According to a Feeding Matters press release, every bite of food for these children can be painful, scary, or impossible, potentially impeding nutrition, development, growth and overall well-being. PFD is often a silent battle affecting more than 1 in 37 American children under age five annually. This prevalence surpasses that of well-known childhood conditions like cerebral palsy and autism.  

This disorder can be an extreme challenge for parents and caregivers who must have specialized training in medical, therapeutic and psychosocial interventions for every meal, often five or more times per day. According to Estrem, despite this high level of involvement from families, “they are often left behind in considering where the field of PFD is headed. Feeding Matters ensures that families always have a place at the table and aims to build a collaborative research consortium that will eventually be the field leader for where PFD research is headed.”  

To achieve this, Feeding Matters will launch the Family-Centered PFD Research Consortium to be co-created and led by patients and families. Specifically, the project will focus on recruiting patient and family consortium members and leaders, training them on research fundamentals and the state of PFD research, establishing consortium governance and then building consensus on a prioritized list of needed research for the field.    

“The establishment of the Family-Centered PFD Research Consortium is a pivotal step forward, ensuring that our efforts are not only collaborative but also deeply rooted in respect and input from the experiences of those we aim to serve,” said Pederson.