Episode Transcript
[00:00:01] Speaker A: Hi everyone, this is Kyler from Feeding Matters.
Coming to you on August 22 is the 2025 Feeding and Eating Psychology Summit. This year we're going deeper. We're hearing from more professionals. In fact, we're going to hear from all four domains of PFD as well as the two domains from arfid. And we're going to look across the last lifespan, starting with neonatology and going all the way to adulthood, most importantly, highlighting the lived experience.
So if you want to come together with other professionals who are engaged and dedicated to serving families and children who struggle to eat while hearing from those families directly, this is your opportunity. We'll see you on August 22nd.
[00:00:43] Speaker B: Presented by Fematters with host Jacqueline Peterson.
[00:00:49] Speaker A: And Dr. Haley Estrom.
Seating does Matter.
[00:00:56] Speaker B: All right everyone, welcome back to Feeding Does Matter. My name is Jacqueline Peterson and I am CEO of Feeding Matters. Typically I'm joined by my co host, Dr. Haley Estrom, but it'll just be me today with our guest, Dr. Maddie Duzik and Dr. Kristin Turner. And they are both OTs who really support middle childhood and older for ARFID. They are coming to us as speakers that are coming to our Feeding and Eating Psychology Summit and their session is called Occupational Therapy Supports and Interventions for arfid. So super excited to dive into their history, what they think about trends that's happening in the field and just to.
[00:01:37] Speaker A: Learn more about them and what they're.
[00:01:39] Speaker B: Going to be talking about at the summit. So Dr. Kristin Turner, I'm going to turn it to you first. Would love to learn more about you and how you even made your way into feeding as a specialty.
[00:01:49] Speaker A: Great, thank you so much.
So, so my journey is started in a different place than I am now. So when I first entered the field, I had the opportunity to work in early intervention in a rural part of Indiana. And so as I was in that field, it became quite evident quite quick that there was not a lot of support for families who had children that were dealing with pediatric feeding disorders.
And we didn't have speech, OT didn't really have a strong presence. So there was one family in particular that really urged me on and made a great impact in my journey to better educate myself. You know we have the, we have, the content is within our scope of practice and but I needed just a little bit more knowledge to help. So I became self taught and feeding to support these families families and really fell in love and had a passion for what I started doing and how I was able to impact for families that from that birth to 3 population.
So fast forward 10 years, I had the opportunity to move back home to Kentucky and get a job at Cincinnati Children's. So I've been at Cincinnati Children's for the last 15 years. So I came in with this passion for feeding and this experience that I had kind of taught myself. And you know, of course, every family, every child teaches you something new and different and unique.
So just utilizing everything that I had in the past and having the opportunity to impact this, you know, institution that had a multi discipline feeding team and treatment of multidisciplinary providers and a population and people coming in was just so amazing. To have feedback from providers face to face instead of having to hunt them down just made such a huge impact.
So I've been there for the last 15 years and you know, through my journey there, I have had the opportunity to work on our interdisciplinary feeding team for the last probably 12 years. And I've been part of their multidisciplinary feeding treatment.
I've also worked with our adolescent med team, which, you know, brought me more into the awareness of arfid, you know, on top of the pediatric feeding disorders that I had already been supporting and so working with that team and receiving referrals and, you know, understanding OT's roles with that population and with those families. So recently we have had the, we have attract teams which are looking at the research within certain areas. So our area is feeding, eating and swallowing fits well with the occupational therapy frame of reference.
And so we, we have a group of six of us and Maddie's been part of that and she has continued the journey and asking questions and showing interest in ARFID and has really helped us blossom and really push forward in understanding treatment strategies and how occupational therapy can best support families and, and our patients in their journeys.
[00:05:29] Speaker B: Thank you for sharing, Kristin. That's amazing. I always find it so interesting how the families that our clinicians are seeing change their trajectories or push them into different areas. And we've, we talk a lot on this podcast about the challenges with education and how you're often having to get self taught. And so it was just really interesting that you pointed that out because it, it's, it's been the challenge. You had to go seek that out on your own.
[00:05:57] Speaker A: It is, you know, now that I'm at Cincinnati Children's, I was able to develop a competency program for all our providers to have that education within feeding, aiding and swallowing. So it is such a blessing that we have within our institute that when you are hired as an occupational therapist, you automatically go through that training.
[00:06:19] Speaker B: Love that.
[00:06:19] Speaker A: Yeah, that's.
[00:06:20] Speaker B: I mean, that's what you had to create because you needed that for the future generations of occupational therapists. And I will get into it later, but you really had the perspective of, like, rural early intervention multidisciplinaries. There's just so many places we could go to talk about.
So, really excited to have you on. So thank you, Kristen. And now, Maddie, do you want to share your story and how you found feeding as a specialty?
[00:06:47] Speaker C: Thank you so much for this opportunity. So for over 10 years, I had my own eating disorder, and it was by no means a linear experience.
It was a lot of one step forward, two steps back, seeking a support, feeling like I was making some progress, and then having some sort of setback. So it really took me more than 10 years to actually reach recovery and what recovery means to me.
And at the time, I was enrolled in occupational therapy, getting my master's, and our introductory course really goes over the framework of occupational therapy.
And it was almost like a light bulb of there are so many supports and services and interventions that occupational therapists can provide that I feel like would have been beneficial for my journey in recovery that I did not have. And so I started asking some questions and looking into the literature and quickly learning there wasn't a whole lot of literature. So I wanted to, you know, just challenged myself in kind of understanding the role of occupational therapy when treating this population.
So it kind of stemmed from a personal background.
And soon after I was done with my master's, I was hired onto Cincinnati Children's. I've been there for seven years, and since day one, I've really just been kind of sharing my passion to whoever wants to listen and, you know, educate and advocate. And it's given me ample opportunities to meet mentors and speak to other teams within our organization and collaborate with them as well.
And I would say, you know, from my first day to children's to now, I'm happy to report that I'm treating, you know, within my caseload. A third of my population is eating and feeding disorders, which is really exciting that we are starting to get the word out, and we are starting to see some really great outcomes.
So when I was hired at Cincinnati Children's, as Kristin mentioned, she is a part of our oral motor competency. So that's when I first met Kristen about seven years ago. And. And, I mean, you said yourself, her background and just her knowledge is so admirable. So I made her my mentor. Whether she liked it or not.
[00:09:38] Speaker B: Mentorship, that's what a lot of young professionals have to do in this field.
[00:09:42] Speaker C: It's like a leech. I was like, oh, you're not going to get rid of me. And I feel like I just.
Kristen, with my sounding board, and she just heard all of my big, crazy ideas that, you know, I wanted to do and change within the scope of occupational therapy as well as within our organization. And she's just been the biggest support for me and within our track team, it's really given us the chance to pursue that research and pursue those collaborations within our organization. So it's been really fun, whether Kristen thinks so or not.
[00:10:29] Speaker A: Oh, Maddie has taught me a lot. That is the nice part. You never want to become complacent into your practice. So she continues to push and helps me grow, too. So it's been wonderful. I learned just as much from her.
[00:10:44] Speaker B: Oh, I love that. And, Maddie, thank you for sharing your story. How do you feel like lived experience has or contributes to either your clinical side of your work or even, like, the research side of your work?
[00:11:00] Speaker C: I feel like state of readiness or helping a family get to that state of readiness, it has given me those skills to really reach those families and educate those families and just support those families, just because I've kind of been in that situation before and I know what that state of readiness or maybe that lack of state of readiness looks like and kind of meeting that family where they are in their moment or in their journey.
So I feel like that has been a benefit to me and my clinical practice.
[00:11:41] Speaker B: Great. Thank you so much for sharing.
Now, Kristin, in having, like, a team member and especially a mentee that you're guiding through some of those guidelines and expanding kind of the program and looking at what that looks like, how was it on your side, understanding her lived experience and how you can integrate that into clinical care or even the research that you're looking at.
[00:12:04] Speaker A: Yeah. So when our tracks team first started, Maddie had reached out to me and again said, hey, here's what I want to do. You know, will this fit under the scope before I apply? And I said, you know, if that's your passion, 100%, we'll make it, you know, part of our. Our scope. And so we did. That was the first thing we worked on that first year, because she came with just, you know, this fire under her that was like, hey, I. I have a platform. I have people willing to advocate and listen. And we took off with it. And first literature review was on occupational therapy and arfid you know, ARFID had been a topic in a conversation that I had been having with clinicians and with families. You know, they're trying to self educate as well and using the Internet and tools. And you know, sometimes that education comes out beautifully for families and sometimes you need to, you know, support what they've read and heard and, and help them understand who their child is and how this has impacted their child. You know, the one thing we know about feeding, eating and swelling is it's so unique to each family and the impact that it has on that family.
So to Maddie coming forward, especially with our ARFID population, just re sparked that interest of, hey, you know, I've been educating on arfid, but you know, do we really understand what's out there for occupational therapy? So I was so thankful that she brought that passion back to the forefront and really made us dive into, you know, how can we support and what is our role?
And I think one of the things that Maddie beautifully brought forward was when families have challenges with feeding, it is more than just the food and the mealtime. The impact goes beyond that one occupation.
And so she was so passionate about saying, hey, for some of our kids, it impacts so many other aspects of their daily living and impacts families in so many other ways. And you know, really bringing it forward to our staff to say, you know what, going out to a restaurant is really challenging for families for, you know, going to public events, going to Thanksgiving. I mean, so many of the kids I had been working with are like, oh, Thanksgiving was the worst day of the year because it is based around food. And you know, so how do we not only understand the impact of feeding and the meal time, but how do we understand the impact beyond that to support family? And Maddie really brought that passion forward.
[00:14:51] Speaker B: It's a great perspective and I think that's something that oftentimes OTs are continuously reminding others as they're working in collaboration because of kind of that system lens.
And many different, like healthcare professionals get that in different ways, but I feel like I hear it a lot from OTs of, you know, your training is about function and your training is about system work and, and so I think you're able to zoom out and see that. And so Maddie, any thoughts on, on that piece of it? Because it sounds like that's some of the perspective you were able to bring a little bit and maybe that's part of lived experience as well as your OT background.
[00:15:28] Speaker C: So I will definitely say there was some personal experience that kind of Gave me that perspective of, or almost reinforced of, hey, this is a unique role that occupational therapy can bring to the, the support team.
I just remember occupations leading up to a meal. You know, if they were really difficult or challenging for me, forget about the, the meal or, you know, following a meal plan being a pleasant experience for me or my family.
You know, I was already set up for failure because I was struggling to brush my teeth or, you know, swallow a pill or take a shower. And it wasn't necessarily that I. The independence wasn't there. It was. There was some other type of impairment, whether that was sensory based or fear based or, you know, control based, whatever that might look like, like, but was impacting my progress as far as fueling my body of what it needed and being able to get myself into these, like, social, feeding or eating environments.
[00:16:48] Speaker B: So in taking that a little bit further, and Kristen, I'll direct this your way as, as you were able to kind of listen to Maddie and think about what changes needed to happen within your, your area. I know you all do a lot of collaboration across different disciplines, and I think you're in a specific area where that's a little bit easier to access.
And so I know that oftentimes when we're sharing about multidisciplinary care, there's one image that people have in their mind of like, face to face meeting with all the professionals at once.
But maybe share with us a little bit about your perspectives, especially because you've seen. Seen it work in many different ways. In ways when it was more challenging to get that multidisciplinary lens and varied perspectives together, to look at a problem from all different angles.
Tell us more about that and where maybe you think that's headed in the next few years or where you would hope it to be headed.
[00:17:42] Speaker A: Yeah, I mean, I hope, and I'm sure many families do, to continue with this collaborative approach just to better understand, you know, I had a family today I was working with and I needed to understand kind of what nutrition needed for growth and development in order to help, you know, the family with what a reasonable mealtime routine during the day looked like to meet both their needs and the child. I need to know medically, hey, are we stable?
Is there additional testing that needs to be done? If so, when and how and, you know, with who. So having the opportunity now to have that immediate response. Our providers are so wonderful about including occupational therapy and other members of the team in that collaborative plan. I know it's a lot on families we do have that everyone's in. You know, we have nutrition and speech and OT all in at the same time. We've tried to streamline our approach, so everybody has their questions to ask. So. So families don't feel like overwhelming. Yeah, yeah. So we have streamlined a little bit, which has been great. And then the medical provider comes in on their own, so families have the opportunity to really collaborate with them. And that's after we meet as a team. So we meet as a team with that medical provider and then they go in.
So I think our interdisciplinary team continues to strive to grow to understand and meet those needs of the family.
But moving forward, you know, we've also had recently the opportunity to work with our adolescent med team. And I think this is an area that we hope to continue to have ot be more of a collaborative approach with, because there are lots of children that are, you know, at that older age that are coming in with arfid, and that team continues to have support from psychology, continues to have nutrition support, continues to have medical providers. But like Maddie had said earlier, you know, what about those other components? We're kind of missing some of the activities that evolve around the meal time that maybe aren't in the forefront of other providers frame and thought process. So that is something we're continuing to advocate for. And so that is what I'm hoping to move forward.
I love the Psychology Summit opportunity for us, and thank you guys for having us. But to be able to collaborate with psychology and understanding the roles of each and how that collaboration can so closely work together, I think that as providers have their strategies, sometimes it feels uncomfortable in the beginning to have another provider come in and say, hey, what about this? But when it works and when there's understanding that collaboration just really supports families and helps patient outcomes improve, it does for sure.
[00:21:02] Speaker B: And I appreciate you saying that because this has been a slow trajectory for us. You know, like, we first identified the need for or really diving deeper into the diagnostic overlap of PFD and ARFID and how the two transition into each. And what does that look like? And then we were like, okay, now I need to dive deeper into psychology before we can even expand beyond that.
And so it's this, this progression.
But we're really here and interested in collaboration and interested in breaking down silos and interested in that, like, shared common language that disciplines can work together on.
And so I love that you're taking this as an opportunity to look at it as collaboration with other disciplines. And so, Maddie, I'll turn this to you, but what do you Think which discipline or disciplines do you think will find your topic especially relevant and maybe why, maybe expected or unexpectedly?
[00:22:01] Speaker C: I feel like the. This is a great chance to open a door with psychology and other behavioral specialists.
It has been so rewarding at Children's to be able to collaborate with these providers and hear, you know, okay, this is some strategies or some skills that I taught this family this week. When you see them next week, week, can you practice those and what might those look like? So we're actually able to do those occupations that are maybe a little bit trickier for the individual or just the family as a whole and practice those strategies to see, okay, what's working well, what maybe not and what can we go back to psychology and problem solve together and. And a great component that we have at Children's is we can also offer telehealth.
So being in the natural environment, especially with the adolescents, is extremely helpful and also gives them that confidence of, hey, not only can I do this in like a controlled environment, but I can also do this in my natural environment and I can now challenge myself even a little bit more to reach my next goal, whatever that might be.
[00:23:27] Speaker B: Great. Well, what do you think? And maybe this is to both of you. What do you think a core question that will be answered from your session?
And maybe it's surface level or maybe it's deeper, deeper down into what collaboration looks like for you both.
[00:23:46] Speaker A: I think one of the core questions will be, you know, how. How do we identify, how do we set those goals? I'm hoping, you know, occupational therapy is very family based. So how are we looking at, how are we setting those goals and then some treatment strategies. Every provider, every family wants to walk away with one little snippet of something that they can start to integrate or change in their routine or, you know, something that will support.
So I'm hoping that we have enough in there that families can pull that one component and make that change.
[00:24:22] Speaker B: I will say that's oftentimes the most requested thing out of different conference sessions is I wish it was more tangible.
And I know that that's so hard when you're viewing different presentations or putting together different things that you're sharing.
[00:24:37] Speaker C: I'm hopeful that our presentation can empower both providers and families as far as kind of taking a step back and looking at, you know, maybe the whole or a new lens, if you will, of, okay, are there other occupations that are maybe making feeding and eating successful or maybe, you know, impacting the progress or where we want to be and just to Start kind of asking those questions and starting that discussion.
So kind of helping guide what that might look like for those providers and family.
[00:25:15] Speaker B: So you mentioned, and you both mentioned this in different ways, just an openness that you have in working with other professionals and that flexibility and kind of that active listening that you not only project with families but also with professionals. What do you think is a tip for maybe even someone newer in the field or maybe a different discipline that isn't as comfortable with your discipline for remaining open in a conversation around either family goals or treatment planning together, what that looks like, Maybe we'll go Kristin first and then Maddie.
[00:25:46] Speaker A: Yeah, I mean, the first thing that came to mind for me is don't be afraid to ask a question and be willing to listen to the answer. And that's for anybody.
You know, I was in our interdisciplinary team today and a recommendation was made and I said, hey, why that over, you know, this other treatment and you know, kind of pushing and advocating for the family to understand and you know, that particular provider was able to share their perspective and why. And I was like, okay, thank you for understanding. But it goes the same for families, really empowering the families to be able to ask questions. And I advocate for that often. I'm like, hey, when you're in a visit with a medical provider, with a dietitian, with a nurse, don't be afraid to ask a question.
You know, we, we all want our medical providers to have the most knowledge in the room, but families have the most knowledge of their child and they have the most knowledge of, you know, their situation. And so really advocating for parents and families to ask those questions and being willing to listen and sometimes the change isn't easy but you know, understanding where the best outcome is going to be that.
[00:27:02] Speaker B: Thank you, Kristen.
[00:27:04] Speaker C: Whenever I'm trying to establish a relationship, I don't want to come in as intimidating or almost like, you know, my way is better because that, that's not my goal. My goal is for us to work together for the best plan of care for the family and the individual. So a lot of times I will just ask that simple question of how can I best support you? Or how as a provider or how can I best support your family or how can I best support this specific individual?
Because again, that's, that's what we want at the end is we want these families and these individuals to thrive and to have the best quality of life possible.
So I feel like just introducing myself in kind of that non threatening way has been a lot more rewarding and Getting a lot more feedback from providers.
[00:28:04] Speaker B: I love that too.
It's so interesting.
[00:28:08] Speaker C: The.
[00:28:10] Speaker B: Method of being able to make someone comfortable and being able to really allow yourself to open up, I think, and I've seen many people take different strategies, but I think it's a core concept in terms of looking at family centered care and patient centered care. And that's one of the reasons that we even started this podcast was we have a family centered PFD research consortium that's really interested in how can we guide the research from the perspective and lens of patients and families.
And I have one more question, but this is typically our last question, so I'm going to ask this one first and then I'll get to the other question. But we are always interested in this podcast as to what do you think the barriers are to patient and family research and what might some solutions be? And I'm really interested in both of your answers just because you do have both that, like, clinical as well as your research experience and then working so closely and so aligned with families as well.
[00:29:10] Speaker A: Maddie, I'll let you go first.
[00:29:15] Speaker C: Biggest barrier I feel like is just overall, like, knowledge and education, especially because there's still a lot of gray area in this topic. And, you know, someone described it recently. To me, it's not like a shoulder surgery where, you know, there's a step by step, like there's, you know, there's no regimen or, you know, structured, like start to finish. This is, you know, how you reach your goals.
So I think it is a lot of just knowledge and education and finding those resources.
[00:30:02] Speaker B: I love that.
[00:30:02] Speaker A: I would agree with that.
[00:30:03] Speaker B: What's your thoughts, Kristen?
[00:30:04] Speaker A: It's the diversity of the families that really lends itself to the complexity of the research. So, and you know, what we love is that every family does have that diversity.
But how do you.
How do you frame some research around to really encompass all components of that feeding, eating, and swallowing experience to say, hey, here's our research, because it's so unique to each family. And so it has been a struggle. As much as I dive through the research, I'm like, there isn't any. But then I try to frame what that would look like. And I was like, oh, it's so complex, you know, and then you, you know, you kind of step back and you're like, how do I encompass that complexity?
Um, because I, you know, and I think Maddie feels the same. We want to share something, we want to leave something behind and, and to leave more education. And so we're hopefully you know, working. And I keep reminding myself, take the next step, even if it's a small step, you know, that is the next step and that's okay. So. But it's the complexity and the diversity, that's what we love about our jobs and it's also what makes us, that research, so challenging. So I think as we continue to educate our teams within our hospital, educate our families, then you're going to get this trickle down effect, have opportunities like this to share what we know from clinical experience and what we're hoping to continue to learn.
You know, that collaboration within our institution and outside of our institution is really going to lend itself. And I'm very, so very thankful for Feeding Matters. And you know, the advocacy you guys have really supported within communities, within families, within providers to challenge, to say, hey, we know it's out here, we know it's complex, but we still need support and we need it from everyone because of that diversity. So I think it's just a great opportunity to bring so many providers together.
The Psychology Summit is a great opportunity. Your international conference brings even more questions and some answers. And you know, the more we ask, the more we're going to, you know, be intrigued to find out. So, so thank you guys for your advocacy.
[00:32:33] Speaker B: Thank you. Kristen, you're.
That's just so sweet. Because it's, I, I agree. It's that complexity that often makes it such a challenge too, because it would be so easy if you could just say it's this, this, this kind of back, like back to your shoulder surgery metaphor. It's.
But the complexity has the beauty in it and that's what makes it challenging in the research too. And that's often what we're saying and what we were sharing with our consortium members that like this whole research, when you're reading research, everybody's kind of describing this population as the same population. And what even our, our consortium members were pointing out was like, we're individuals and we all have very different experiences even amongst the 20 of us. And so how does research make space for that? I think is a really good question to keep asking. And I love that you agree that we, we can challenge the status quo and still advocate for families and learn together and still collaborate.
And that, that is definitely what we're all about. And so in terms of the summit, what are some, what are a session or two or in the summit in general, what are you looking forward to?
[00:33:43] Speaker A: I look forward to all of it. And I know that seems like, that don't really answer the question, but Because.
[00:33:51] Speaker B: I know any answer works.
[00:33:53] Speaker A: No, but because of the diversity in it.
What I love my passion is working with other providers and hearing family stories. So there isn't one component that I'm like, oh, I only want that.
I want all of it. And I want that to really start to light a fire, to continue to move forward.
And hopefully out of all of that, you know, like families, I'm like, hey, take one thing, change one thing at a time. And so sometimes I do have to remind myself, hey, I know you want all of it, but here's that next best one thing. So move forward with that. But I think hearing the diversity and the complexity will help spark what that is supposed to be.
[00:34:41] Speaker B: I love that. Thank you, Maddie.
[00:34:43] Speaker C: As much as I'm looking forward to all the presentations, I would have to say I'm looking most forward to the lived experience.
Just because it's those individuals and those families that drive me to continue to want to better myself as a provider and to learn more and want to, you know, create this multidisciplinary, like, support for these families and just continue for us to have like these great discussions and these great opportunities to get together.
[00:35:22] Speaker B: Yeah, that's so true. And that's why it's so important to kind of share both pieces of it. There's the research, there's what's happening in clinical work, and then here's the lived experience. And that part is really important to us at Feeding Matters. And so we try to incorporate it in various ways or listen to our community and how to incorporate it.
Well, I'm certainly looking forward to your session. I'm looking forward to the whole summit. It's the Feeding and Eating Psychology Summit. It's going to be available live August 22nd with a few pre recorded sessions, but a live Q and A and it will also be available on demand afterwards. So please check it out. You, you'll be able to see Dr. Turner and Dr. Duzik and we'll see you there. I really could talk to Kristen and Maddie all day long.
It's just such a pleasure to meet you both. Thanks for joining me today and yeah, I hope everybody has a great week. So thank you.
[00:36:11] Speaker A: Thank you for having us.
[00:36:12] Speaker C: Thank you so much. We'll see you at the summit.
[00:36:14] Speaker B: See you at the summit.
[00:36:16] Speaker A: Bye.
Feeding Matters understands the significant financial difficulty that comes with supporting a loved one with pediatric feeding disorder or PFD and avoidant restrictive food intake disorder or ARFID. Each fall we open the Family Assistance Program.
Since 2019, we've awarded $40,000 to families throughout the United States.
Applications for the 2025 cycle are currently being accepted and are due Friday, October 10th.
Feeding Matters will award $1,000 grants to 10 families.
Learn more and apply today at feedingmatters.org family assistance that's feedingmatters.org family assistance.
