[00:00:00] Speaker A: 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
[email protected] Family Assistance.
That's feedingmatters.org Family Assistance, presented by Feed
[00:00:53] Speaker B: Matters, with host Jacqueline Peterson and Dr. Haley Estrom.
Feeding Does Matter.
[00:01:05] Speaker C: Hello, everyone. Welcome to Feeding Does Matter. My name is Jacqueline Peterson, CEO of Feeding Matters.
[00:01:11] Speaker A: And I'm Paley Estrom. I'm an associate professor in the School of Nursing at University of North Carolina, Wilmington.
How are you doing today, Jacqueline?
[00:01:20] Speaker C: I was just about to ask you.
I'm doing good.
We both have had lots of meetings today, so we're probably getting into our Slappy Happy range.
But that's actually perfect because we have a guest that we've known for quite a while. And so it's always exciting to be able to talk to someone we've known for a while in this more public venue, to be able to share the great work that they're doing. So it's with great pleasure that I welcome Dr. Amy Delaney to Feeding Does Matter. To talk all of her work and all things feeding development and just in general, Amy, welcome.
[00:01:58] Speaker B: Thank you so much for having me. I'm very excited. Slap happy or not, I can join the club, for sure.
[00:02:05] Speaker C: Yeah, that's just how meetings go now. Back to back these days.
[00:02:08] Speaker B: For sure. For sure. We all get it
[00:02:12] Speaker C: already.
[00:02:13] Speaker B: Nerding out.
[00:02:14] Speaker C: Yeah, you guys already were slap happy and nerding out on research.
Well, Amy and I have known each other for well over a decade because I met Amy when I first started at Feeding Matters, and she was a founding medical professional council member of Feeding Matters, formerly Popsicle center, and so has been a guiding voice and strategic advisor to the organization over several, several years and now decades as we turn 20 next year. And so that's my introduction to Amy, even outside of all of the amazing clinical and research work that she does. But, Amy, let's turn it over to you to introduce yourself and all of your roles.
[00:02:56] Speaker A: Sure.
[00:02:56] Speaker B: Sounds good.
So I'm Amy Delaney. I'm an assistant professor in speech pathology and audiology at Marquette University, which is in the Midwest, in Milwaukee, Wisconsin.
I'm also the director of my lab, which is called the Neurodevelopmental Feeding and swallowing lab, or NDFS lab.
I've been at Marquette. This is my seventh year.
And previously I spent 20 years at Children's Wisconsin, half of that as a clinician specializing in feeding and swallowing in medically complex kids. And then the second half of those 20 years being a clinician scientist.
And, you know, at a point when journeys change, I had an opportunity to share, shift my role to focusing more on teaching new clinicians and to developing my research lab.
And that's what I've been focused on as a old junior faculty, ultimately.
But, you know, that's your journey and just had some great opportunities present themselves and I took advantage and that's kind of what led me here.
Yeah. With some of my earlier connections with Dr. Colin Rudolph and Dr. John Arvidson, I got pulled into Feeding Matters from, you know, year two on ultimately, and have had a variety of roles.
[00:04:21] Speaker C: It's like every single version of a
[00:04:23] Speaker B: volunteer role, kind of. Yeah, I've experienced it. I have lived experience.
And so I can speak to certainly the evolution of Popsicle to Feeding Matters and the excellent leadership that's always been present and passion. So it's always a joy to be
[00:04:42] Speaker A: a part of it.
[00:04:44] Speaker C: Thanks.
[00:04:45] Speaker A: For those that don't know, can you say what Popsicle was and how it turned into Feeding Matters?
[00:04:51] Speaker B: I think that's a great. Jacqueline question.
[00:04:54] Speaker C: Like I can.
Which is actually so interesting that you asked this on this podcast, Haley, because of how much we will be talking about feeding development, because. So Feeding Matters started as Popsicle center and it was parent organized partnerships supporting infants and children. Learning to eat and feeding development has always been kind of like a conversation as it's evolved. And then we were able to do the effort to really identify when do we need to be paying closer attention or have further evaluations and when is it? Pediatric feeding disorder versus when are we just learning?
So learning to eat, definitely like part of feeding Bellman. So I love that that's kind of in our roots.
But, Amy, you started as a speech language pathologist. What kind of got you into the feeding as a specialty?
[00:05:46] Speaker B: Yeah, so when I first started as a clinical fellow, I had exposure to, you know, a wide range of topic areas. As a speech pathologist, we come out, you know, being able to treat anything, but not really an expert in one thing.
And so my first love was really motor speech disorders. So the motor aspect of how we learn to talk and move our mouth.
And at the time, Bob Beecher, who regionally was an expert in our. In Feeding and swallowing with Dr. Rona Alexander as well, mentored me on conducting video swallow studies, clinical feeding evaluations, treating kids with dysphasia.
And I just fell in love immediately with the area.
And so I learned so much from him. And then Joan came in after Colin Rudolph started our more interdisciplinary feeding clinic and was part of kind of that whole evolution.
And it was at that time that we were starting to see in a more concise way, children that we could actually almost start tracking and talk about consistently. And I just had questions. I was a pretty new clinician, and I'm like, do I have a test I can give these kids to identify if they have, you know, oral motor problems or feeding problems, or why are they struggling to eat? What's. What's the root cause? Or should they be able to do this at this age? I don't know.
Right. Can I diagnose them? Is this a problem or is this developmentally appropriate? And that really bothered me.
And so I was encouraged to, you know, think about going back for my PhD, which never in a million years was what I was going to do in any of my undergrad or graduate work.
Research was never something that I was interested in.
But, you know, again, I was open to that possibility. And I had the contact made with UW Madison, with Ray Kent, who's an icon in our field in motor speech. And at the time, so when I entered, it was 2002 and feeding. Really, even at that point, people weren't doing it at the university level, particularly in our realm. And so I couldn't find a mentor that actually had feeding experience.
But Ray, being as brilliant of a man as he is, said, okay, well, let's figure this out.
This is an area. Let's try to develop it.
And then.
So he was always very supportive of that, even though it wasn't the cool thing to do.
And then he decided to retire early. And then Dr. Katie Husted, who's now chair at Madison, became my mentor, and I was her first mentee. So that was a great relationship. But she let me do a dissertation in feeding.
And, you know, that was.
That was groundbreaking for me and Amy,
[00:08:58] Speaker A: when you say our realm, are you meaning in speech language pathology?
[00:09:03] Speaker B: Yeah, yeah, yeah.
And, you know, my. I took. I took the approach of my dissertation, my PhD, as I wanted to set the groundwork for my research program, not just do a project in a lab, which, you know, a lot of people say, just do a project that's not your life's work, you know, and go on um, maybe it will be, but it really. I wanted it to be. And so I did a ridiculously large dissertation where I, you know, 63 typical kids that I traveled around and recorded and did all these things. So. But it really became the basis of everything that I'm doing now.
So it was worthwhile. The eight years was worthwhile, but I was also still working at the hospital, halftime and commuting and, you know, so I was not a traditional student, just like I'm not a traditional academic. And so that's just how I roll, I suppose. And that's great.
[00:09:56] Speaker C: Well, yeah, and it brings a lot of value, perspective and alternative, like, views.
[00:10:02] Speaker B: Yeah, for sure. No, it's just.
[00:10:03] Speaker A: That's all.
[00:10:04] Speaker B: It's all worked in my favor and just, you know, got to be open to opportunities.
[00:10:08] Speaker C: Yeah, for sure.
Now, along that time, too, you also partnered with Feeding Matters on the consensus paper as well. Yeah, yeah, I was asked in that meeting too.
[00:10:21] Speaker B: Yeah, I was asked to be part of the consensus, which was a fabulous group of. Of people from around the country and internationally. And, you know, it was really quite the process. That's when I first met Jacqueline.
What were you doing? You were like, taking notes or something?
Taking notes and organizing and she had a really, really well at it.
No, but it was really fascinating to have all these people come together and try to hash out something that we all knew bits and pieces of and how to come together with common terminology and, and, and philosophies and thoughts about it. And it was tough. It was, it was a really tough process.
[00:11:03] Speaker C: And.
[00:11:05] Speaker B: But at the end of the day, it's like the simplest answers is what we ended with, you know, from a name, from a definition, from the domains. You know, if, you know, when I teach it now, students are like, oh, yeah, that totally makes sense. I'm like, oh, you have no idea.
[00:11:21] Speaker C: Yeah, they, like, don't understand the labor of love that it took to even, like, frame it out.
[00:11:27] Speaker B: Right, right.
[00:11:29] Speaker C: So.
[00:11:30] Speaker B: And what ended up happening was that the definition of age appropriate feeding really aligned with my research interests, my research
[00:11:40] Speaker A: program,
[00:11:42] Speaker B: and, you know, full well knowing that using age appropriate feeding as our benchmark, as for the diagnosis of PFD
[00:11:50] Speaker A: is
[00:11:52] Speaker B: needing to evolve. Right.
We need to better understand what age appropriate feeding actually is to apply the diagnostic criteria.
[00:12:01] Speaker C: Yeah. And I think you even said during the consensus meeting, like, yes, we do need to use this as the definition, but please know when you're doing this as the definition, there aren't benchmarks for age appropriate. Right. Like, just know we're Gonna need to do this also in the future. And I thought that that was a great perspective of like, being future oriented and understanding that, like, this is still needed, but we don't have the normative data either.
[00:12:27] Speaker B: Yeah, thanks. Yeah, it's again, it just. It was really.
There's a lot of insight following that and. And where we need to go as a field feeding field, much less speech pathology field clinically and in research. And, you know, everything that I do from a research perspective selfishly, is to drive me as a clinician and to help me as a clinician.
You know, I'm not interested in things that don't inform me as quickly as possible because I had a hard time. The clinician and I want to be able to treat my kids.
[00:13:00] Speaker A: I think Jacqueline just highlighted one of your biggest gap identification.
That normative is what is.
Had really been needed.
[00:13:11] Speaker B: Yeah.
Yeah. And that's where my dissertation even evolved. It was okay.
What skills are expected for kids of certain ages? And, you know, for a dissertation, you can't norm a scale or do anything.
And ultimately, and this is, of course, again, how things go. I went to my preliminary meeting and my proposal for my dissertation, and I was showing these two scales that were out there, and I'm like, but there's no red. There's no gold standard. And so I'm just going to use these and try to develop better norms. And they said, no, I think you should go develop your own measure.
Like, so I had to go back and like, redo my dissertation proposal and.
And do a completely different process to create a tool that we're now just working validating and collecting more data to expand age ranges.
[00:14:04] Speaker C: So.
[00:14:05] Speaker B: And that's. And that's one aspect of feeding development.
So.
And that's just the oral movements that we observe. That's one part of it. We will never have one test that we can give. It is going to be multiple tools and measures that we need to use. There's never going to be one test. It's just impossible. Too complex, for sure.
[00:14:29] Speaker C: Well, and as you kind of pivot to what you're doing in your lab, maybe tell us a little bit about even the vision before you got to Marquette of, like, what you wanted to do and how you wanted to. Because it sounds like you saw this from the very beginning and how this progressed.
[00:14:43] Speaker A: Yeah.
[00:14:44] Speaker B: So the, you know, my dissertation was really exciting. We looked at children 8 to 12 months of age. We did standard feeding observations and did video analysis and just, you know, got a ton of information about how kids learn to eat from that perspective.
Of course, I collected all kinds of data on these kids that I didn't use for my dissertation. And so that is what I started diving into years later when I got to Marquette, because I just. You didn't have the capacity while still doing a lot of patient care to be able to do both.
And understandably so. Yeah, yes, yes. But that became frustrating. You know, initially I'm like, okay, that's great, I'm a clinician.
And but then I felt like, okay, I have some, some ideas and some things that I would like to do that are in my head. And so I need to move forward and shift my, you know, my strategy.
But a lot of my questions and a lot of what has driven me from a normative standpoint is sitting in my teams, my interdisciplinary team, sitting next to Mary Beth Feeling and Megan Van Horn, my dietitians and them doing a 24 hour diet recall and crunching numbers and me just like saying, I want numbers to crunch. I want something, some way to measure what I'm doing.
And so the paper that we published in 21 on texture consumption patterns and that kind of this texture analysis came from me sitting next to them and coming up with a way to quantify a 24 hour, but based on the needs of a speech pathologist. So while the dietitian is doing nutrition analysis and food group analysis and macro and micronutrient calculations, I started formatting my own table and analysis of. Okay, that's great that they have all these food groups, but what textures of the foods are they? Are they advancing their diet? How often can they eat them?
What utensils are they using? And do they have utensil specific problems?
Are they still eating at night? When is that appropriate or not appropriate? To be a red flag, how much are they consuming by these different textures? So not that they just had textures in their diet.
So I started creating this analysis and I'm always to. My supervisors always were so upset with me because, you know, it's too much. You don't need to do all of that, you know, like. But no, I do because now when I see them again, I can actually like really measure what I'm doing. This is amazing.
[00:17:20] Speaker C: The value of knowing the clinician side.
[00:17:22] Speaker B: Yeah, yeah.
[00:17:23] Speaker C: So.
[00:17:24] Speaker B: So that eventually evolved into this kind of texture analysis and the paper that we eventually published.
But through a series of, you know, brilliant pediatric gastroenterologists that I've gotten to work with, Colin Rudolph, Richard Noel, and then Praveen Godet, who was our primary author on Consensus.
While we were still both in Milwaukee at the hospital, he contacted Nestle Research and they do the fits studies every eight years where they do national sample nutrition analysis. And we pitched to them to use their data set to run a texture analysis on this national sample of kids. And so they, yeah, so they data shared with us. But what they wanted us to do then was create a texture framework. So because there are no standard developmental texture frameworks out there, we have idc, which is a dysphasia, you know, texture framework. But everybody calls foods different things. So it's really hard to even with my analysis that I was doing. And what we published in 21 were kind of generic global texture categories. So Nestle was a great supporter of pulling together this group of people that we got to work with. Suzanne Evans Morris was on that panel, Praveen and Sarah Smith Simpson and who's part of Feeding Matters too and who's a food scientist. So we got to create this developmental framework. And this is the paper that was just published a couple of months ago.
And it's not meant to tell you when children should be eating certain textures.
It's texture categories that have food science backed descriptions and ways to measure food in the home, like home friendly. So, so that we can actually study kids in standardized ways to develop age appropriate expectations for texture exposure and texture progression so that we can identify when children aren't developing and advancing their diet.
[00:19:44] Speaker C: Right.
[00:19:45] Speaker B: So let me say that in a very different way.
[00:19:47] Speaker C: Right?
[00:19:47] Speaker B: One of the ways that we diagnose kids is that they have delayed advanced diet.
[00:19:51] Speaker C: Right?
[00:19:51] Speaker B: Everybody knows they have a delayed advanced diet. Well, what does that mean? At what age are they not advancing and what are they advancing to? What is a solid food, what is a puree?
You know, what are these?
And ultimately I want primary providers and caregivers to be able to say, I don't think my child's progressing, I don't need to see them.
When I see them, they're really having a problem.
But because there's no norms out there, even internationally, and these global guidelines are very generic. It's liquids and solids, right? Start solids at six months and then progress. And that's what we provide caregivers.
And so one of my just huge initiatives and hopes is to provide guidelines and guidance to caregivers and pediatricians so they can catch this before they need to see me. Ultimately, I think we can prevent a lot of early problems by giving them the right tools.
So we created this framework that we're going to use to study typical development and my big vision is texture curves that look like growth curves.
And I can just plot my children and say they are within that range of what we expect or they are below that range of what we expect. They have risk.
Now come see me and come see me earlier.
[00:21:23] Speaker C: Yeah. So say that maybe in a different way.
[00:21:25] Speaker B: Yeah.
[00:21:26] Speaker C: Because if. If you're a parent and you're.
You're thinking about how you're starting solids and getting the advice from either social media, your friends, your parents, and your pediatrician, are you thinking about texture? What does that look like to be able to then talk to a clinician who is thinking about texture advancement in that way? And what does the development look like, look like for their skills?
[00:21:48] Speaker A: Yeah, for sure.
[00:21:49] Speaker B: So there's two ways that I would use the framework. One is if we study enough children and learn that, I think we will actually redefine feeding stages. So right now, the feeding stages are arbitrarily based on, well, child visit schedules.
But that's not really how children develop. And so we have these gaps in time between, well, childs that, um, parents are struggling. Go try it again, you know, and. And you know, unless they're really falling off the growth curve, we're not super concerned if they're not advancing their diet.
[00:22:22] Speaker C: Yeah.
[00:22:23] Speaker B: So through the research that we're doing, I would like to create guidelines and pamphlets and education materials that caregivers can just. Now they can go look at and actually see vetted evidence about when their child is meeting a milestone.
[00:22:40] Speaker C: Yeah. Because we don't talk about feeding milestones either.
[00:22:43] Speaker B: No, I mean, feeding milestones are drink from a cup.
[00:22:47] Speaker C: Yeah.
[00:22:48] Speaker B: Finger feed, chew well. Okay. I can't measure that. I can't observe that. I'm not going to observe the same thing that you're observing or a caregiver is going to observe. So, you know, that's one piece of it.
Those milestones are when you can do those. I can eat and get most of my nutrition from chewable solid foods. And here's what that definition is. Not solids. And you are exposing them to it.
So that education from that level. But then to have it as a diagnostic tool that when you do come to see me, I can do a diet and texture analysis, plat them, measure how far off of expectation they are to measure that and justify why I might actually need to treat them and have somebody pay for me to treat them. Um, so some sort of way to quantify how they're eating versus just saying they're struggling to eat and they meet
[00:23:45] Speaker C: criteria, and then that Also allows you in your intervention too, to be able to see how they're.
[00:23:52] Speaker B: Oh, for sure.
[00:23:53] Speaker C: In their treatment.
[00:23:54] Speaker B: Yeah, for sure, for sure.
So. So twofold. It's always clinical tools that I want to develop, but I feel like there's a lot of kids that we don't actually need to always see. I think we can prevent them from needing us or having a protracted disorder.
[00:24:12] Speaker A: So what all do you have coming out in the literature soon, I think.
[00:24:20] Speaker B: Yeah. So a couple months ago, the texture paper was published. It's in the Journal of Texture Studies. I didn't have funding to make it open access yet. I think I might. So for those of you that aren't aware of this, we pay to do our research. We do our research, we get it accepted, and then we actually have to pay to publish it for you to see it. It's a lot, which is a lot. And it can cost anywhere from 2 to $5,000 per article, if not more.
For any paper that you would publish that people don't have access to that you have to, you know, join, you know, this organization.
So my hope is to get that out because I think this is really going to be foundational. And if everybody can use the same texture framework, when we now go to compare studies, we're actually talking about the same types of foods.
[00:25:11] Speaker C: You're really able to compare.
[00:25:12] Speaker B: Yeah.
[00:25:13] Speaker A: What is the title of that one or what will it be?
[00:25:17] Speaker B: Yeah, I have no idea. Let me think about it.
[00:25:21] Speaker C: She's got five pending, so they probably all of her titles blend together.
[00:25:25] Speaker B: No, it is called, it's called a developmental Texture framework for Food Texture Progression in Infants, Implications for Feeding Development, Oral Motor Skills and Pediatric Feeding Disorder.
It's a lot.
It's in the Journal of Texture Studies and it's really. Our, our concept are the basis of how the framework was developed, the food science behind it. How all the tables on the foods, all the categories, all the food properties that we can measure and, and it's home friendly. So a caregiver, and I'm using it in my current research and we're collecting our data using this.
Where caregivers look at the definitions and then choose which categories they are. And we vetted that against pictures.
Then they submit information about what they're feeding their children.
You know, it's not a true validation study at this point, but you know, that's part of that, part of that process.
Yeah, but the goal was that anybody could pick this up because I want dietitians to be able to use it, nurses to Use it. Caregivers to be able to use it, to at least recognize and use a common language so at least we know what we're talking about. Otherwise we have no idea. That's been the problem in our literature is that we're all using different terminology.
[00:26:41] Speaker A: Yep.
[00:26:42] Speaker C: So not able to collaborate with each other in that way. Yeah, yeah, correct.
[00:26:47] Speaker B: So we can't build on the literature. It's always all these individual pieces. Yeah.
[00:26:50] Speaker A: Uh huh.
[00:26:51] Speaker C: So you've got that coming out. What else do you have coming out? Because you've got a lot cooking right now.
[00:26:56] Speaker B: Lot cooking.
So we have two papers accepted that aren't out yet through American Journal of Speech Language Pathology and it's a two part scoping review and it's actually for anybody that's done a dissertation you will understand.
I redid my dissertation because I finished my dissertation in 2010, which was a long time ago and I want to publish. I never had the opportunity, I shouldn't say that I never published on my dissertation for a variety of reasons. But I can't put it out now. I needed to update the literature. Well now, so many years later, now we have these scoping reviews that really didn't exist at that time as your standard process. Right.
So to really be evidence based, we redid the dissertation as far as developing the tool and creating the measure, the skills that we're observing. So it's a two part scoping review. The first one is on how we gathered all of the articles that we were going to review and who were, who was studying typical development, feeding skill observations, what was their methodology, who were they studying?
You know, what was, is it lab or in home, what kinds of textures or foods were they doing? What were their measures? So just like what's the current state of the methodology typical for. Typical for typical eating development. This is specifically the oral movements that we observe while children are eating.
And then the second part of that is then we took all of the observations that they made and we compiled this huge list of one hundred and seven different observations that have been used in the literature.
And then we did an analysis of those skills, ultimately saying, are they texture specific? Are they oral structure specific? Are they oral phase specific?
Is this a comprehensive list? Do we need 107?
And ultimately proposing that we have so many different, it's semantics, it's so many different ways to say the same thing that it's again hard to compare literature because somebody's talking about job movement in one way and somebody the other and their definition is like slightly the same But a little different. And so you, you're not really sure or how are they measuring chewing or watching chewing.
So we did this really detailed analysis to kind of show how we need to think about oral feeding observation and proposed that we need to consider texture. And what we've found is that generally the same movements are observed regardless of the texture people are eating. So we don't need a skill for liquid and a skill for puree and a skill for solid. A lot of the movements are the same outside of sucking and biting ultimately and that we need to have skills that are organized by phase of swallowing because then we know that physiologically we're capturing everything that we need to be observing and they can align then with findings from a swallow study, hopefully.
And then we need to be really aware to make sure that we're looking at jaw, lips and tongue and all the different movements that are required. So for example, if you're going to take a bite from a spoon, you need to observe the spoon. You're going to open your jaw. You have to hold your jaw open long enough for the spoon to come in. You need to close it smoothly in appropriate timing. Your lips need to touch the spoon to be able to clear the spoon.
You know, your lips need to maintain closure while you're moving food around in your mouth and then you know, while you swallow. And there's different movements that are related to that. These are all things that clinicians observe every day. We just don't have true ways to measure this and report on it consistently.
Um, so this two part series is really talking about the current state of the norms and we give all the normative findings from these studies and then talk about, and give this list of all the skills that are there. And right now we're in the process of inviting people for a Delphi consensus rating study where we're now taking the 107 skills and we're getting all these clinicians, psych, OT, speech, nursing to rate these skills on are these important skills? Yeah, right. And can we observe these skills? And then we will organize this into a smaller concise list of skills that will then become again what the tool was that my dissertation created and redoing that. And then we use that to measure and observe kids and they get scores and we can decide on what are age appropriate movements and have a way to measure that in our assessments and, and quantify that. So that's, that's like one tool that we're, that we're working on in addition to the texture analysis. So that would be two standard pieces of a clinical assessment ultimately.
[00:32:08] Speaker C: Yeah, for sure. And so in terms of like how you take something that you're like doing in your research and, and doing something like Adelphi, how does that look now thinking about like mass dissemination and, and what you hope the field embraces for it or like what, what do you feel like this builds to as a trend or what becomes standard?
[00:32:28] Speaker B: Yeah. And you know, everything in coursework and academia and organizations and social everything is obviously evidence based. We need evidence.
But to actually apply evidence takes changes in clinical practice and education and buy in.
It takes employers to say, okay, this might take longer, or maybe it doesn't take longer or I need to spend a little time doing this analysis and you know, so getting it into real world practice, I, I feel is much easier than what maybe somebody would think. I developed these and was using these when I was still doing my clinical work and just built it in and it was very easy and streamlined.
But you know, that shift is hard. That was me. So if somebody came to me or my employer and said, okay, we need to get a school score for this and you need to, you know, run these numbers a little differently. Yeah, that might be, that might look intimidating, I suppose, but it's, we need to change the standards in our clinical practice or we will not be able to get funding to see our kids.
We're not going to be able to show that what we're doing is making changes.
[00:33:40] Speaker C: It's a hard uphill battle from like a system aspect in terms of all the things. Yeah.
[00:33:46] Speaker B: And it takes time and money.
[00:33:47] Speaker C: I mean, it does.
[00:33:49] Speaker B: Yeah, it takes time and money. And studying. You know, Suzanne Evans Morris, who did the pre feeding skills book and checklist, which has been kind of our standard and our domain for a long time, had never been, you know, and she said it was really hard to update. It's hard to study this. It takes hours to analyze these videos and to see enough kids to create norms, you know, and she's like, you know, and her, the, her, her scale was based on six kids. And she's like, I know that's not enough, but it's what I had at the time.
I had 63 for my dissertation. I'm like, that's not enough.
[00:34:24] Speaker A: Right?
[00:34:24] Speaker B: I mean you need hundreds and hundreds and thousands of kids to be able to do that.
But in the meantime, you look for trends and you look for the evidence that's out there to inform you in a more sensitive way than what we currently. I mean that's all we can do at this point.
[00:34:40] Speaker A: Yeah. Right. We. We do the best with the evidence we have at hand.
[00:34:44] Speaker B: Absolutely. Yeah.
[00:34:45] Speaker A: And we continue to gather and until we could do better.
[00:34:48] Speaker B: Yeah.
[00:34:49] Speaker A: Speaking of gathering data.
[00:34:50] Speaker B: Yeah.
[00:34:50] Speaker A: For open studies, do you have a study that's open right now that you'd like to share with us?
[00:34:55] Speaker B: I do. I have an open irb, so I my institutional approval.
And we are actually studying all children. All children. Like come one, come all. Ultimately.
Ultimately we are looking at children between 4 months of age and 12 years of age.
But our sweet spot is really 4 months to 24 months, which is when we know is the most critical, rapidly changing developmental period in feeding and ult development.
And we do have a grant through Asha foundation right now where we're particularly focused on children 6 to 8 months and between 12 and 24 months ultimately.
And so we need lots and lots of kids that are eating typically developing in a typical fashion. There's no concerns about feeding to help develop these benchmarks and these norms to provide to expand on the age ranges that we had from my dissertation. Ultimately we are also accepting children with PFD and dysphasia because it's. I'm very interested in differences in medical status and developmental development or in developmental profiles and how that impacts feeding. So while I want to create these measures, I'm very interested in the underlying mechanism. Why are you developing these skills appropriately and you aren't and you both have congenital heart disease.
We have two papers coming out on congenital heart and looking at some of those things. And it's fascinating that there are differences. It's not as obvious.
So there's these underlying mechanisms that we're interested in. So we have. Yep. Recruitment where you can email us at our lab website and parents can self identify and participate. And it's using a smartphone application that we developed for in home data collection. So it's all on caregivers time through an iOS device.
So we could only afford to choose iOS or Android. And so so right now it's iOS specific. But parents fill out surveys, they take videos of their children eating. They do a developmental questionnaire, they do feeding flag surveys and a 24 hour diet recall. And we analyze all of these people pieces that we consider necessary to develop feeding skill norms.
So they get a website again for the system. They can go to the Marquette University website and search me and they'll get all that information.
And we just need lots of kids. It's just, it's hard. It's hard to get a lot of kids and.
But we're you know, we're in the process. So the more we can hit people, share and be interested in participating, you know, it just helps all of us, it helps the kids and it helps us as clinicians.
[00:37:49] Speaker C: It does. And like this research because we always talk about that both PFD and ARFID are emerging fields. And so like we just need just flat out more research, but especially on like early feeding practices and early feeding development and stuff that has a perspective that involves multiple disciplines. Being able to collaborate and talk about with each other is really helpful contribution to the literature as well.
[00:38:13] Speaker B: And you know, as we talked even at the last conference about the gray space between domains. So, you know, one of our projects and one of our papers was on acceptance refusal patterns, which is really kind of falls into the psych literature. But it's the kids that we see and how do we know what's appropriate amounts of refusal of bites and picky, you know, being resistant to eating. And that literature is very scattered.
And so we're using the same information to look at nutrition, nutrition outcomes and parent child interactions and prompting and reinforcement from caregivers in not just like how the mouth is moving.
So taking into consideration all those other aspects of our work and we have dietitians, GI and psych on our papers and collaborating because I think that's just really important to include, you know, all of those perspectives.
[00:39:11] Speaker C: Yeah. Because there's not like just one thing that you can look at. Just say like this with your blinders on for everything else.
[00:39:17] Speaker B: Yeah, yeah, yeah.
[00:39:19] Speaker C: It's all.
[00:39:20] Speaker B: There's lots and lots and lots for us to do. So it's very exciting because there's just no end to the opportunities in this current state.
[00:39:30] Speaker A: Like you're gonna describe them while feeding and be done.
[00:39:33] Speaker B: Correct.
This is what I described is life's work. This is my life's work.
[00:39:37] Speaker C: Yeah, it is, it's your life's work. And then you're going to have to identify other people to also take it,
[00:39:44] Speaker A: to continue it too.
[00:39:45] Speaker B: But you know, Pete's feeding, particularly in speech pathology field, is. It's so exciting. We have a research group where we meet with a lot of.
[00:39:55] Speaker C: We've heard. This is so helpful, this research group.
[00:39:57] Speaker D: Yeah.
[00:39:58] Speaker B: And it's just amazing the new scientists that are coming out, it's. We are. It's a very young group and. But a lot of people with just slightly different perspectives and focus and populations that they're studying. But we've really decided that we need to work together and inform each other and not fight against each other or do things in parallel that are going to not be able to be compared. Like we're just, we're over that.
So it's really exciting. It's just. Yeah, it's a really exciting time. I think the next 10 and 20 years of research is going to be unbelievable.
[00:40:35] Speaker C: Oh, that is really exciting. And that's like such a, a great way to showcase collaboration, especially in research. And that's so much of what we talk about a lot on here.
[00:40:46] Speaker D: Hi, so sorry to interrupt. Did you miss the live event for the Feeding and Eating Psychology Summit? No problem. It's on demand. From September 8 through October 31, access every session and learn evidence based interventions for key developmental stages for pediatric feeding disorder and arfid. Plus hear directly from families as they share their lived experiences. Eligible on demand attendees can earn 6.5 hours of continuing education credit. Learn more and register today@feeding matters.org backslash psych-summit that's feeding matters.org backslash psych dash summit.
[00:41:31] Speaker C: As we close out, we have one last question that we traditionally ask each guest, but we're taking a little bit of a spin on it, especially as we're talking to a researcher.
[00:41:43] Speaker A: Yeah.
So Amy, what are some barriers you see to incorporating a lived experience into like really having them inform research development and shaping research?
[00:42:04] Speaker B: Yeah, yeah. I think, you know, the lived experience of children is hard because they're little and they don't know. Right. So I think we do in a way try to speak to that from what our observations are and themes and patterns. And I think we need to think about that in our littles.
And then as children get older, it's not just what they can do and what I observe, but what they think about it.
And you know, it's hard when we have kids that ultimately then also have delays. And it's hard to, you know, be consistent in the types of questions we might ask our children and our participants. But you know, their words, their reactions, I think are as critical as the observations of how their mouth moves and their diet.
And I think we've been very focused on those observations versus the experience while we're observing those things and having that play a role.
I'm really interested in, you know, caregivers perception of how this is going, even their stress levels. And it's a barrier to, you know, these families have so much going on and it's, they're struggling and, you know, you don't want to ask them to come in for a two hour lab session even though they Might be happy to do it, you know, and that's a, it's a barrier to having access to families. And that's where we developed the smartphone application. It came through Covid. But like I, I need to get large numbers of children and even if it's not so lab specific, it's better than nothing.
And it's actually very sensitive ultimately in the ways that, you know, you can gather information and you know, and having parents respond to, you know, did this go as you thought it was going to go? And how stressful is this and using some of the problems that are out there to understand and pair that within our observations of what we're seeing and the problem lists that we have and you know, the problem areas that we identify. But you know, parents have very different perceptions on that depending on their relationship with food, their history with eating, their culture, you know, their practices, their philosophies about eating. And so, and that's where like when we did the developmental framework, we wanted it to be super inclusive and be very generic so that anybody can speak to it. We're not, you know, there's not a progression here.
We want people different philosophies and feeding and if it's baby led weaning or spiritual or cultural, whatever that is, to at least be able to have the same language. And then we can say, you know, how do children learn to eat in these different ways? And, and you know, sometimes it's more stressful for families and, and not so, you know, there's just a lot of barriers of access and I think recognizing that each person within that dynamic has a perspective and it just may not be in the ways that we expect. Like you're going to fill out a survey for me, but you know, how can we translate some of the things that we see into, you know, their experience and, and you know, give them credence for that.
[00:45:24] Speaker A: Did some of them help you with piloting those items or
[00:45:30] Speaker B: for the textures, drafting?
[00:45:32] Speaker A: Yeah, with creation of those things.
[00:45:35] Speaker B: So at the time we did not have a parent on the panel.
Since then and before we published it, like I said, I was using it in my research and we, we had multiple caregivers speak to us about how was that to use are these to define.
And we're still kind of gathering some of that. We didn't do it in, as a system systematic manner, but that is one of our next steps as well. It's, you know, the framework is there as a framework that can be fluid ultimately as evidence of a framework. Yeah, we just needed a way to start studying this and using the same language and then.
[00:46:17] Speaker C: Yeah, yeah.
[00:46:19] Speaker A: The way you were describing everything, it sounded. Yeah, it sounded like it had been influenced by lived experience.
[00:46:26] Speaker B: Well, you know, lived experience as a clinician having those same struggles.
[00:46:30] Speaker C: Yes, right.
[00:46:32] Speaker B: And having been part of Feeding Matters and, you know, the work that we do there and then as well as previous families that have participated in research and, and talking with them and how could you not. Yeah, yeah, for sure.
[00:46:46] Speaker A: Be influenced heavily.
[00:46:47] Speaker B: Yeah, yeah, exactly. So that's definitely a work in progress, but at least it's there now that we can.
We can now systematically study this and. And let it evolve.
[00:46:59] Speaker C: Oh, for sure.
[00:47:00] Speaker B: Yeah.
[00:47:01] Speaker C: And that's what it should be. It's an evolution and it's continuous building.
[00:47:06] Speaker B: Yeah, for sure.
[00:47:08] Speaker C: So we are excited for that building and we're excited to talk about it as more things come out.
Thank you so much, Amy, for all your work and for joining us today and listeners out there. Thank you for joining us this week and we'll see you next week.
[00:47:23] Speaker B: Thanks for having me.
[00:47:24] Speaker C: Bye. Bye.
Bye, everyone.
[00:47:30] Speaker D: On October 11th, Feeding Matters invites you to Feed the Cause, the annual signature event to raise funds for education, advocacy and family support for children with pediatric feeding disorder and arfid. Held at the beautiful Papago Golf Club in Phoenix, Arizona. Enjoy an evening of gourmet chef tastings, mixologist creations, live music, a silent auction, family stories and and more. To purchase your ticket or become a sponsor or purchase a ticket for a caregiver, visit feeding matters.org Feed the Cause. That's feeding matters.org Feed the Cause.
