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Living our Values: Collaborative, Innovative, Inclusive

Published by Jaclyn Pederson, MHI on Feb 29, 2024

As I sit down to pen my thoughts to share with you this month, the importance of trust within our community is top of mind. Your trust in us is the anchor of our organization, and it’s a responsibility we take seriously.

In recent weeks, we’ve actively sought your feedback on various aspects of our work – from refining our storytelling and awareness initiatives to enhancing support structures for families and advancing educational initiatives. Your responses, deep in insight and wisdom, are shaping the trajectory of Feeding Matters. It is your trust and openness that empower us to make the necessary adjustments, both big and small, ensuring that we remain, a community-driven organization.

Our commitment to continuous improvement goes hand in hand with nurturing the trust you place in us. We recognize that trust is earned through transparency, active listening, and responsive action. As we navigate the complexities of pediatric feeding disorder (PFD), our goal remains resolute: to transform the field through education, advocacy, research, and support.

As we bid farewell to this month, I believe it also important to acknowledge and celebrate the significance of Black History Month in the United States. While we celebrate the achievements and contributions of Black individuals and leaders who have shaped our world and inspired positive change, we must also acknowledge the systemic barriers and disparities that impact marginalized communities, including Black children and families.

This is especially true within the PFD system of care. In our mission to empower families and transform the PFD system, we understand that this requires a collective effort grounded in compassion and understanding. This Black History Month, Feeding Matters recommits itself to amplifying the voices of marginalized communities. Your feedback allows us to do this and your trust in us to learn and make continuous changes is vital.  Together, we can work for equitable access to resources, education, and support for every child affected by PFD, both within the United States and globally, all while respecting and honoring the trust you’ve placed in us.

We have the power to shape a more just, compassionate, and equitable future for children, inclusive of all races, ethnicities, and backgrounds.  Thank you for entrusting us with this vital mission and for being an integral part of our community.

Best,

Jaclyn Pederson, MHI
CEO

Do you have feedback to share with us? Email us at info@feedingmatters.org, we want to hear from you!

Feeding Matters Values

Collaborative
We partner to ensure every voice is heard, ideas are openly shared, and we work towards a common goal.

Innovative
We take the initiative to leave comfort zones, embrace new ideas, and generate change.

Inclusive
We lead with trust and empathy to invite and value all perspectives.

Why PFD assessment and management vary for each patient and community

Published by Jaclyn Pederson, MHI, chief executive officer on Dec 01, 2023

Reporting on our findings from researching the landscape of pediatric feeding disorder treatment

Every day at Feeding Matters, we hear stories from families and professionals of progress and struggles, of success and setbacks, of those clinicians who helped and of those who faltered.

A zigzag line along an upward trajectory of progress is typical for families of children with pediatric feeding disorder (PFD). The journey is never simple, but it’s much easier with the right support.

Ensuring that more families get the right support from the start underpins every part of our work at Feeding Matters. Whether raising awareness, advocating for better insurance coverage or common terminology, our goal is always to help every family access the feeding care their child needs.

To get there, we need more research.

Building a body of research-based evidence on children’s needs and treatment options is what we can point to when we demand better insurance coverage. Data on education pathways is how we partner with national associations to improve clinical education on feeding as a specialty. And research is how we ensure every child gets the care they need at the right time.

That’s why I’m so excited about the November 2023 study we published in the journal Child: Care, Health and Development, an international, peer-reviewed journal for pediatrics covering children’s health and development. The study, Assessing the US treatment landscape for paediatric feeding disorder: A survey of multidisciplinary providers, documented the data on what options exist for patients with PFD.

None of the findings are shocking. All of it aligned with our expectations of what we hear from families and clinicians in the field. However, data means more than anecdotal experiences when it comes to understanding the landscape of PFD treatment.

Stories move people. But they don’t always move institutions. Data does.

Now that we’ve documented what treatment is happening in communities, we can build on that research with the ultimate goal of improving patient pathways and treatment outcomes.

The goal of assessing the treatment landscape for PFD

Most children with pediatric feeding disorder are treated in the communities where they live – often by occupational therapists (OTs) and speech and language pathologists (SLPs), often through early intervention (EI). Most research about PFD in the U.S. comes from pediatric psychologists working in a small number of institutions providing multidisciplinary treatment for PFD across the United States. Spots in these programs are limited, and waiting lists are long.

This leads to a disconnect between PFD research and the treatment that most PFD patients actually receive. What’s happening on the ground in communities is different from the treatment occurring in multidisciplinary centers –– and from what’s getting researched and published.

Aiming to ensure there is a common terminology and improving treatment through partnering, we knew we needed to start by defining the treatment landscape and building an evidence base. Our goal for the study was to determine the following:

  1. Who is treating children with PFD

  2. What are the treatment interventions

The methodology of assessing the PFD treatment landscape

To determine the landscape for PFD in the U.S. and identify provider and treatment delivery characteristics, we collected primary data through a web-based survey targeting providers from all four PFD domains –– medical, nutritional, feeding skill and/or psychosocial between January 2022 and March 2022.

In total, 815 clinicians completed the survey from January to March 2022. Only those practicing in the U.S. –– 83% –– were included in this study. Clinicians from every U.S. state were represented.

Survey respondents answered 71 questions regarding patient, provider and treatment characteristics.

As a follow-up to the survey, we conducted focus groups to better understand PFD treatment occurring in communities throughout the U.S.

What we found by researching the PFD treatment landscape

As expected, survey results showed that most PFD treatment occurs at the community level through EI or outpatient feeding therapy rather than in multidisciplinary programs. OTs and SLPs provide most of the feeding therapy through sensory and responsive feeding. These are not well defined treatment interventions or protocols so for the purpose of this study, we defined the two as follows:

Responsive feeding: Focuses on establishing positive feeding relationships and mealtime interactions which honor the child’s autonomy and need for intrinsic motivation to support developmentally appropriate feeding skills and nutritional intake.

Sensory feeding: Use of systematic play-based sensory interventions to promote feeding skills and dietary diversity through graded changes in food properties and presentation.

Tracking progress varies. Goal achievement, caregiver report and clinical judgment represented the most common tracking methods reported across all providers. Less common was the reported use of standardized outcome measures, clinic-specific measures or biospecimen labs.

The most frequent length of PFD treatment was 6–12 months (37.6%), followed by 6 months or less (32.2%).

Roadmap for next steps

What’s clear from this new study and anecdotal evidence is that the relatively new field of treating pediatric feeding disorder lacks best-practice guidelines for assessing and managing PFD or even the tools to help clinicians do so. The absence of guidelines makes the triage process and medical home management for pediatricians challenging as well. Gaining a better understanding of the community treatment landscape can help to identify clearly these practice gaps and inform future research on assessment and treatment.

Achieving our goal to get every child with PFD the care they need at the right time is a massive undertaking. To help us get there, below are our organization’s goals for the next 15 years:

  1. Establish best practices for assessing and managing PFD.

  2. Ensure all children are screened for PFD at well visits.

  3. Ensure children with PFD qualify for early intervention.

  4. Define a specialty pathway for accredited PFD specialists.

  5. PFD qualifies for Early Intervention.

  6. Secure more federal research dollars allocated to funding.

  7. Inclusive insurance coverage.

All of these goals depend on building greater awareness about PFD. Making sure PFD becomes a household name would open doors to more research funding, better insurance coverage and improved care.

Researching the landscape of PFD treatment underscores just how much work there is to do to ensure children with PFD get the care they need. It’s also the first step in getting there.

Thoughts from the Airport after the ASHA Convention

Published by Jaclyn Pederson, MHI on Nov 20, 2023

This week took my breath away. Something I’m working on in my own leadership journey is taking the time to celebrate and acknowledge success as sometimes I’m moving too fast to do so. And this week while attending the ASHA Convention, Igniting Innovation, I was able to witness first-hand the growth of our PFD movement…and it blew me away. So during the convention, and now with all of you, I am celebrating the moment.

I’ve been around Feeding Matters for a long time, but not always in this position. I was here when our founder, Shannon Goldwater, first presented the idea to create a stand-alone name and identity for the broad spectrum of feeding difficulties in 2015 to our PFD Alliance (previously Medical Professional Council). I was around to coordinate the flights and hotels to make sure leaders were there for the consensus meeting in Phoenix in 2016, around in 2017 and 2018 to help “herd cats” to keep the PFD Consensus publication moving, and around to plan and listen to the community to build a strategy for our PFD identity movement in 2019 and beyond. Even though I’ve been involved in the planning and execution of all of this, I don’t think I fully comprehended the impact that it would create years down the road, like now in 2023. Some dreams are so big they feel like a hazy image instead of a clear picture.

Some dreams are so big they feel like a hazy image instead of a clear picture.

But this week that image became a little clearer. I was in awe as I saw the representation of SLPs specializing in pediatric feeding overwhelm any room they entered, I was proud as I saw discussions of what emerging research is happening in PFD (and it’s a lot), I was curious as I listened in on brainstorming of what is needed to better support feeding specialists. I heard ideas of what we can be doing better and what we are doing well. And overall, I felt overwhelmed at the sheer growth and the familiar way that PFD is now discussed at a non-feeding specific convention. PFD as a name didn’t exist until 6 years ago. Now, it is commonly used amongst professionals from many different disciplines, backgrounds, and geographies including SLPs, OTs, MDs, and many more. I am in awe. It was the stuff of dreams.

If this week is any indication of the many other important disciplines involved in PFD and the direction this entire community, not just our SLP friends, is headed with our PFD movement, we have an unbelievable journey ahead.

Overwhelmed with gratitude and in awe with excitement– that’s how I’d describe the week. Thank you to all of you I saw and to those I didn’t get a chance to say hello to. And thank you for your passion and partnership to turn these big, hazy dreams into reality.

On the threshold of a new school year…

Published by Jaclyn Pederson, MHI on Aug 25, 2023

Dear Friends of Feeding Matters,

If you are one of the many people embracing the return of routines, packing lunches, sports and activities, you’ve been on my mind. I am wishing you a smooth transition from lazy summer days to busy homework nights. At Feeding Matters, we are acutely aware that this time of year can bring a mix of excitement and apprehension.

Our recent consensus endeavor, a summit with leaders in the PFD and ARFID communities, also produced a mix of enthusiasm and anticipation, underscores what is core to our mission. We believe in the power of consensus and the value of uniting various perspectives to focus on what children need. Reflecting on our recent Consensus Summit in partnership with Emory University and Children’s Healthcare of Atlanta, I was reminded of the magic of collaboration. This gathering allowed Feeding Matters to dive into the challenges and solutions related to PFD and ARFID diagnoses. The collective effort of this group is propelling us toward a brighter future, and we intend to share these results with our wider community soon.

The lessons that we learned from this consensus serve as key principles that resonate within our team but that I also think might benefit us all:

  • Embracing core values: Where there is disagreement, values aren’t aligned. By bringing individuals to the table, united in their dedication to improve access to care for children and families, we found pathways to alignment.
  • Words matter: The meanings, intentions, and assumptions tied to words often vary.  As we work to provide clarity within our field, we always have to ensure that we are speaking a shared language.
  • Continuous learning: A shared commitment to always do better invites us to approach each day with open minds, ready to absorb insights from one another.
  • Challenging assumptions: Assumptions can easily take root regarding various fields, disciplines, and individuals. But only by actively questioning these assumptions can we begin to find common ground and forge meaningful connections.

While these principles have allowed us to learn and grow, they also extend to our full community.

As we stand on the threshold of a new schoolyear, we approach it with a shared commitment to collaboration and growth. Thank you for being an essential part of our community. Together, we can transform challenges into triumphs and nurture a more promising future for all children with PFD, their families, and the professionals who treat them.

In gratitude,

Jaclyn Pederson, MHI
CEO, Feeding Matters