At the 2022 Feeding Matters Annual PFD Alliance Symposium: Stepping into a Brighter Future, a session of the 9th Annual International Pediatric Feeding Disorder Conference, Feeding Matters PFD Alliance Pillar Leaders reflected on past achievements while examining tools and resources available for building a brighter future for children with PFD. Please enjoy this series of Question-and-Answers from our Pillar Chairs.
Now that we have a general PFD Toolkit, how else could we leverage this content? If we create a stakeholder specific toolkit, who should we target and how do you see this content being shared?
Access to meaningful information regarding PFD is a key initiative for Feeding Matters. Our goal is to continue providing free resources to the PFD community that promotes awareness, identification, and intervention strategies for both families and providers. Like the PFD name and diagnostic criteria, broad dissemination of this material can help to create a common language about PFD for improved care.
To grow awareness within our PFD community, we need to leverage our current content and develop new content. Our first action is to share links, handouts, and other resources, to our team members and to the families we serve, to encourage consistent messaging. Remember to share links to the FM website, PFD Toolkit and PFD Alliance app! Spreading the word to our larger medical and intervention communities can help identify red flags in children who have not been identified! Next, we can add new content. Is there a new toolkit you would like to see? Are there specific diagnoses or topics that you find yourself explaining repeatedly to other providers or families? Are there teaching materials that would assist you in explaining PFD and intervention to others? What about a child-friendly version of the Toolkit for for siblings or other family members of children with PFD?
Finally, we need to grow awareness outside our PFD community to families not yet identified with PFD. Most caregivers are unaware that children shouldn’t struggle when learning to eat, yet they are the first people to recognize a feeding problem in a child. To decide when their child is struggling more than expected, caregivers ask other caregivers and search the web and social media. All of this occurs before they talk with their primary care provider! Getting information about PFD out to where caregivers search for meaningful information about typical feeding could have a huge impact on awareness and early referral and identification! Do we need a specific toolkit aimed at caregivers without a child with PFD? What should be included? What other ideas do you have?
We would love to hear from you! Please share your feedback by emailing email@example.com so we can work together to make PFD a household name!
Amy L. Delaney, PhD, CCC-SLP, Education Pillar Chair
Feeding Matters has made excellent progress in bringing together a community of diverse stakeholders. As Family Support Pillar Chair, who else needs a seat at the collaboration table? What is a good first step in this outreach campaign?
Feeding Matters takes a unique approach to caring for children with PFD, incorporating the family voice and the healthcare professional voice. I can personally attest, through years of working with healthcare providers and caring for my two children with PFD, that having both voices present has been essential for an achievable and impactful plan of care for my kids, and our entire family. There are two additional voices I believe would add significant value at the Collaboration Table.
First, are Elected Representatives at the local, state, and federal levels. Bringing these people to the Collaboration Table will broaden awareness of PFD. Once our Elected Representatives are aware, they can help drive awareness through enacting and supporting activities such as PFD Awareness Month. Additionally, Elected Representatives can enact legislation, and drive related efforts, that support care for children with PFD. An example of this is where the State of Arizona passed laws requiring insurance companies to cover elemental formulas for certain medical situations.
Second, are School Healthcare Staff. This could include, but not be limited to, nurses, councilors, physiologist, Occupational Therapists, and 504 Plan / IEP Plan coordinators. Adding School Healthcare Staff to the Collaboration Table will help them better understand and support the unique needs of the growing number of kids with PFD. School Healthcare Staffs’ feedback at the Collaboration Table would also help families and healthcare professional understand the situations that occur in a school setting, which may not fully be understood because many of us are not in that school setting.
A first step to involving both groups could be creation of a short, couple minute video explaining PFD, sharing a real story or two from families struggling with PFD, and providing recipients next steps to take in support of children with PFD. This should be sent directly to targeted representatives and school healthcare providers in addition to share via social media to these groups.
Brandt Perry, Family Advisory Council Chair
What can professionals and families do to advocate and increase awareness of PFD in their communities? How can families and providers come together in their efforts?
I am the mother of three adult children (and proud grandmother to two grandchildren.) One of my children had/has special needs (he just turned 30!), and I partnered with many special education teams over the years. I was honored to have worked for 6 years on the Colorado Special Education Advisory Committee. I think my passion for advocacy began when I realized families were not always valued in this process. Of course, this was decades ago – and I do see some improvements. I have been a part of Feeding Matters since the first meeting and have watched it develop into this amazing organization. An organization that continues to bring families and professionals together to improve services for children with PFD.
Families bring the most powerful voices to advocacy, and parents and professionals can partner to raise awareness of PFD. Feeding Matters is working to get a PFD Awareness month in every state and territory. We have a resource on our website (https://www.feedingmatters.org/awareness/) that explains the process for getting PFD awareness month recognized in your state. Professionals can ask families to add their voice to any effort and lead the way towards establishing this month. Alternatively, parents can bring this resource to their feeding team to partner with professionals.
We are still working to raise awareness in support of children with PFD, and their families. Another way families can influence this effort is to share their story – with your representatives in government, with your team, and with Feeding Matters. Click here to submit your story!
We have a powerful voice – a choir – when we raise it together. The keynote speaker of this year’s International PFD Conference (Dr Scott Berns) was not only inspiring, but he also gave us a roadmap for how to move our mission forward. One thing that I took away from his talk is that it takes all of us. And people we may not even think of. Parents, Professionals, Children (yes – our older children can be powerful advocates!) – we may be the core. But we also need to consider how to partner with other organizations who serve children with special health care needs. We need to collaborate with industry (we had a wonderful talk this year of a partnership between Gerber and a University, looking at texture sensitivities in children with Trisomy 21) and insurance companies. We need to partner with government representatives. You may not feel you have a voice by yourself but think of all the people you know. In all these different areas. Together, we can raise awareness of PFD in the communities where we live. And Feeding Matters is here to help – with resources and to make connections. Remember to download the app!
Erin Ross, PHD, CCC-SLP, Advocacy Pillar Chair
How can providers and families find ways to participate in research? Where is the best place for a person unfamiliar with research start?
Greetings from the Research Pillar! Great questions. I encourage anyone interested in PFD research first download the PFD Alliance App. The App has groups connecting people with aligned interests, such as family support, research, and a shared group where professionals and families share space. Join the Research Projects Group. There you will find PFD Alliance members looking for connections in research, whether it is current studies looking for participants, clinicians/providers or researchers networking with one another, or families suggesting research topics.
I would also check out your local universities to see if they have Occupational Therapy, Speech Language Pathology, or Nutrition programs. You can look at faculty profiles to see what their interest areas are. I have often had clinicians reach out to me at St. Catherine University looking for a faculty to partner with in a study. This is also a good resource for families if you would like to find the full article for a research study.
Researchers often recruit for studies using Research Match. It would be fantastic if individuals with PFD were represented in that database as well. Additionally, if you participate in research for any reason, please advocate for utilization and tracking of PFD as a diagnosis, as well as ARFID where it applies.
If you are new to research, searching the internet can be extremely overwhelming. One tip is to make sure the websites or organizations have a .org, .gov, .edu or other reputable web address. For example, the American Speech, Language, and Hearing Association (www.asha.org) and the American Occupational Therapy Association (www.aota.org) are good options for resources on how to integrate research into your area of practice.
Paula Rabaey, PHD, OTR/L, Research Pillar Chair Elect and Hayley Estrem, PhD, RN, Research Pillar Chair