Feeding Matters Community,

Last month, our newly formed Family-Centered PFD Research Consortium met just before the start of our International PFD Conference. It was a gathering I had been eagerly anticipating because the work of this group has been a dream for Feeding Matters and for me for over a decade. The Consortium is taking on an extremely important task: setting a research roadmap for the field of feeding from a family and patient lens.

What does that mean exactly?

Imagine you are a parent of a child with pediatric feeding disorder, and you’re asked to complete a survey about your experience as a caregiver. You begin completing the survey and you run across a medical term you have to Google. Another question uses a word to describe your child that you would never use, maybe it’s offensive to you or outdated. The survey itself is filled with questions with pre-determined answers that don’t align with your experience and don’t allow you to feel seen or heard.

While the researchers who created the survey are on the same team as parents and patients, with the same goal, to help individuals with PFD and/or ARFID, the researchers are by definition objective and parents and patients are by definition subjective or personal. Blending these two perspectives is a core function of the Family-Centered PFD Research Consortium.

We know that the fields of PFD and ARFID need to be researched even more but families and patients must be there at the start of the research, rather than just being the subject of it. In the example above, a survey created without initial lived experience input could be fraught with misinterpretations and preconceived notions that impact the results of that survey, and the overall impact of the research itself. Research that is often used in insurance policies, future research, and treatment development.

The Consortium meeting was invigorating and inspiring—the conversation was urgent. We heard from members with lived experience such as parents and caregivers of children with PFD, people who struggle with feeding themselves or did as children, as well as professionals with lived experience. In the room, we also had subject matter experts who serve as project team members including physicians, psychologists, feeding skill experts, and disability advocates.

Core to the conversation around family-centered research was communication and the words we all use. Clarifying language in research and diagnoses, and broadly in the field, is a leading priority for the group and for Feeding Matters. We will continue to hone, refine, check, and be open to changing as our common language evolves.

In the simplest terms, we left the meeting knowing that words matter.

The Consortium will continue to advance their work, and I am eager to share updates with the feeding field regularly. Feeding Matters has always been family-centered and it’s meaningful to see this legacy continue into the field of feeding research.

Best,

Jaclyn Pederson, MHI
CEO