Episode Transcript
[00:00:00] Speaker A: Presented by Feed Matters with host Jacqueline Peterson and Dr. Haley Estrom.
Feeding does matter.
Hello, everyone.
I am here with, of course, my lovely host, Dr. Haley Estrom and myself, Jaclyn Peterson. And we are a bit tired.
[00:00:27] Speaker B: It's a good tired.
[00:00:28] Speaker A: It's a good tired.
[00:00:29] Speaker B: Yeah.
[00:00:30] Speaker A: It's Sunday, day after the international PFD conference. It was our 12th international PFD conference and I know, yeah, 12th. Isn't that crazy? Yeah.
How do you feel about it?
[00:00:47] Speaker B: Pretty good.
[00:00:48] Speaker A: It was very inspiring.
[00:00:51] Speaker B: Yes. No, I. I was saying and that I feel like it's probably the. I mean, I felt like it was one of the best ones.
[00:00:58] Speaker A: Oh, I love that, Hayley.
[00:01:01] Speaker B: Yeah.
[00:01:02] Speaker A: The team did like such an incredible job. So co chairs of the conference committee, like a huge shout out to them, Dr. Raquel Garcia and Dr. Amy Delaney, put together an incredible agenda. They're very thoughtful about the work that they do. And that agenda was not only for the in person portion of the conference, but also just an incredible agenda for the on demand portion as well. And that opens March 1st. And the entire conference committee just put so much of a labor of love into this agenda and making sure that it's really meaningful. No matter what your journey is, whether you're a parent, a professional, what your discipline is, how you're entering beginner intermediate advance, they really try to hit all areas and really give you a lot to think about. Because this year, what were we doing?
[00:01:54] Speaker B: Getting curious and staying curious.
[00:01:56] Speaker A: We were getting curious and staying curious. And so I think they really did that.
[00:02:00] Speaker B: Yeah. Yeah. So if you weren't able to attend in person, I think one of the things you'll appreciate most when you're watching On Demand is the keynote by Dr. Kofi Essel.
[00:02:10] Speaker C: Eating one or two vegetables. The adult is only eating one or two things as well, so they only have a limited palette as well. So how do you work alongside families to figure out what things would they be more open to and what things could they consider?
[00:02:25] Speaker A: Everybody, like, could not stop talking about it the whole weekend. It permeated through every presentation that we heard after. I feel like every single presentation I heard like a callback to Dr. Essel's presentation and his was beyond the plate and really thinking about what is the intersection between food insecurity, feeding development and pediatric feeding disorder. And it gave us all a lot to think about. I think it's just not a world where, you know, we're used to talking about how are we collaborating with different disciplines and how are we broadening our lens and how Are we making sure that we are partners with, between parents and providers? But this really called us to action and challenged us to like broaden that view and think about food insecurity and think about partners that we need to be including in this work as well.
[00:03:16] Speaker B: Well, and just one of the things that I remember in particular he was talking about was the, the, the food waste too. Yeah, that can come a lot in, in feeding therapy. So yeah, can't miss that one.
[00:03:29] Speaker A: Well, and that's like, and so that's been the ongoing conversation that him and I have been having, which is why I was so excited for him to come to the conference because I, I, I met him at a zero to three speaking engagement and I just knew that everyone was going to be obsessed with him because I was. And so think about that.
[00:03:52] Speaker B: No you don't.
[00:03:53] Speaker A: And I think it's challenging because we think about like, you know, we need to evolve what our therapeutic interventions and guidelines look like and there is the need for more research in that area and we do need to think about how we're meeting families where they are. But a lot of the, like existing advice does produce a lot of waste and that, that is really challenging. And so he really called us to think about that as well. I loved his presentation. What were some other highlights in person for you?
[00:04:26] Speaker B: Well, okay. I always, I always feel like I'm saying, well, you know, I'm a nurse, right.
[00:04:31] Speaker A: It's okay to remind people maybe it's a first time person listening.
[00:04:35] Speaker B: So if, if you're a first time person. I am a, a nurse PhD and I really liked hearing from a DNP, so a doctor of nursing practice. So I really liked hearing Dr. Tina Greenson's presentation.
And so she was talking about a project she did for her, her DMP, which was taking the, the CRFs.
[00:05:03] Speaker A: Oh yeah.
[00:05:04] Speaker B: So they took the psychosocial common report form and they changed it into a shorter version, but they used it for their, their clinic visits and their feeding clinic.
And that way they had a lot more discussion in their clinics for the psychosocial piece. And it was a lot better because then they were engaging with caregivers also, but they were also assessing that piece more consistently and systematically.
[00:05:35] Speaker A: I love that. And I think that's also another theme coming out of this conference which was how integral the psychosocial domain is in everything. And I think, I think that's why the framework of pediatric feeding disorder is so important and why we really look at it as a framework that you can't, you can't separate psychosocial or mental health or the trauma that families are impacted by, you can't separate that from any of the feeding skill development, the nutrition or the medical pieces. And so I think that was a conversation I heard happening a lot too, which was that call to think about, like, how are we doing this differently and what does that look like?
[00:06:17] Speaker B: Yeah, well, but how about for you, Jacqueline? What, what is something that stood out for you?
[00:06:23] Speaker A: I'm always just so in awe at our community and the positivity that is in our community.
And it was something that, it's something that you always feel at conference, even virtually. But you felt it way more this time because everybody was in person excited. You could see collaboration happening in real time. You could see networking happening in real because, yeah, I mean, I guess back when I was in OT school, I mean like projects were being developed, research ideas were happening, like community councils were forming for different states to bring feeding matters to their local community. So it was really cool to see all of that happen. And that's, I think what's going to be so exciting as we head into the on demand portion of this in the next two months. Because that community still exists and Feeding Matters, we are a digital first and community driven organization. And so even though we were in person, you know, we're still here behind our computer screen, behind our camera and behind social media for you. And that's really important to us. And so I think if you are an in person attendee that's looking forward to doing the on demand sessions, know that we're all still here and know that your colleagues and your friends that are, that you met this weekend are still there. And then if you didn't get to attend and you had FOMO or, or just weren't able to, because I know a lot of professional development has been cut, you get to just enjoy being there virtually too. And we are there behind our computer screens as well. I don't know. So that was one of my favorites was the collaboration.
[00:08:40] Speaker B: Yes, I really liked hearing from Jean Marshall on the long term outcomes for like patient centered look.
[00:08:52] Speaker A: Yeah, there's a lot of patient centered look.
[00:08:56] Speaker B: I mean, it's also, I'm a big proponent of family centered, but having a patient and family centered. So. But the patient centered, hearing the patient's voice, hearing from the kids and former kids.
[00:09:07] Speaker A: Yeah, well, and I will say, because our podcast is focused on patient and family centered research, if you are someone that's interested in research and especially in this area of pediatric feeding as well as it Being patient and family centered. Dr. Marshall is someone that you do want to check out.
Like if you're looking to kind of dip your toe in or even head to the deep end, that's really important as well. She got huge claps when she even asked a question. So she was a bit of a celebrity. We always have the feeding celebrities. So what are you looking forward to for On Demand?
[00:09:45] Speaker B: With the On Demand, I'm really looking forward to all those lightning talks. I think that's going to be super exciting.
[00:09:54] Speaker A: Yeah, I think the lightning talks will be super exciting too. I think that's one of the things that people love the most because we just, I mean, we need a quick hit information grab sometimes. And those lightning talks are five minutes but really good research is presented and so it's a great opportunity to get a lot of information in a little amount of time.
[00:10:17] Speaker B: Yeah. Almost like a paper session, but better.
[00:10:20] Speaker A: That's so that's how it was adapted from when we were trying to figure out the ways to make our virtual conference really engaging. That's, that's how that came about. I think. Another, another thing that's really cool about the on Demand period of conference is just how international you realize this conference is. I mean, all over the world there are presentations from representing communities and local communities from all over the world. And so it's a great opportunity to really learn what are other countries doing that we may be able to learn from in whatever area you're in? And so I think that's another thing that's really cool. I mean, as we were looking through the agenda, we were seeing Fiji and India and just so many other places. Yeah. In different languages.
[00:11:03] Speaker B: Australia.
[00:11:04] Speaker A: Oh yeah.
[00:11:06] Speaker B: And there's a Spanish.
[00:11:07] Speaker A: Mm. Yeah.
[00:11:08] Speaker B: I mean it's fantastic.
[00:11:10] Speaker A: It is, it is really the International PFD conference. I had someone say to me at conference, they were like, you know, people say that they're international a lot, but this is the first time I met someone from Australia, Brazil and India here. It's like, oh yeah, we are international. That's true.
[00:11:29] Speaker B: Yeah. I mean it's truly a conference with international representation.
[00:11:35] Speaker A: Yeah, yeah. There's always room to grow. And so that's why if you are someone that really enjoyed this conference, please share it, please share it with others. Help them be a part of this community. Because a lot of things that we talked about during the symposium and during some of the focus groups that we had were how to move this field forward.
[00:11:55] Speaker B: Healthcare professional awareness is primary sub theme or category. This is speaking to the need that it needs to be a household name. We need the general public to understand vfd.
[00:12:07] Speaker A: And so I think that's a key piece that we all own. And I would say another theme was we really talked a lot about like getting local. How do we disseminate a lot of the great work that's happening and how can we build networks in communities to do that grassroots outreach and that grassroots level system change.
[00:12:27] Speaker B: I was talking with Meg Simeone. We had an idea and this is something we did in 20, 2020. When we were virtual before, it was the thing you had to do.
But when we were presenting the Mapping the Gaps for the scoping review, Dr. Jinhy park came down from Boston to Chapel Hill and I went from Wilmington to Chapel Hill and we presented Mapping the Gaps from like a. We did a little, like a little mini regional conference.
[00:13:01] Speaker A: Yeah. Oh, no. It's so funny that you guys talked about that because we, I had a whole same conversation with someone else and we were like, yeah, that's what our local community councils can do is host like little virtual conferences together so that they're all together even though we're on demand.
[00:13:17] Speaker B: And that was really fun. That was a good like. So we did, we did the virtual conference together.
[00:13:23] Speaker A: Yeah.
[00:13:23] Speaker B: And we presented what we had.
[00:13:25] Speaker A: I love that.
[00:13:26] Speaker B: Together. Yeah, it was, it was great.
[00:13:29] Speaker A: Well, think about that. So another thing that we announced at conference was next year, and next year it will be February 26th and 27th, 2026. It will be highly virtual, in virtual and on demand.
Ipfdc. And yeah, if you are a local person who is really trying to build up your community locally, like leverage our resources, leverage our help and maybe do what Haley just said and build a local community. Another thing that I just thought of, that I really liked about seeing everybody, hearing everybody's thoughts and just the positivity in the room was not only was everyone really upholding the theme of get curious and really leaning into uncomfortable conversations or trying to figure out like you know, really questioning and self reflection and challenging themselves in their own opinions and biases to try to learn more and actively listen from their community, but I think what I also heard and loved was that a lot of consistency and a lot of everybody being on the same page. And that's just, for me, so exciting because one of the hardest parts of advocacy for this field in general has been how fragmented it is. And a lot of that is just purely because there's so many different disciplines and it looks so different in every place.
But there was so, so much Consistency and similarity in what everybody was saying that we need to do to move the needle on the system.
And I just. I loved that. I don't, you know. Did you kind of see that, too?
[00:15:17] Speaker B: No, I really did. And so we did have our family centered PFD research consultant.
[00:15:23] Speaker A: Oh, yeah, we should talk about that.
[00:15:25] Speaker B: Yeah. So we had a meeting for that to set our research prioritization on Thursday.
[00:15:32] Speaker A: Right before the conference. Yeah.
[00:15:33] Speaker B: So it was between the Shannon Goldwater Summit and conference. I was hearing and seeing. And, you know, I got to sit next to some of the consortium members during conference. Conference, and we would see it during the presentations and I would look over at them and we'd be like, you know, like saying, we see it. We see it up there on the screen. They're talking about some of the same things, and. And sometimes it would be more of. From a provider slant, but we were hearing some of the same themes. You know, it was like, okay, now they're talking about early screening too. Okay, now they're talking about, you know, we were hearing definitely similar things over and over. So I feel like we're on the right track.
And it was very exciting.
[00:16:23] Speaker A: We were hearing a lot of feeding development and PFDs of disability. We were hearing a lot of early screening needs.
But, yeah, it was all very aligned with what the consortium talked about. And I think the family centered PFD research consortium is mental health.
Yeah, no, there is a lot of alignment, but I feel like that's.
I mean, that's why this conference is so cool. We once had someone describe it to us as a blend of the science and the human connection.
And that's why I think it is. It is a moment in time to not only be able to really look at good things that are happening out there, but also making sure we are listening to lived experience, making sure we are questioning ourselves and questioning tradition where we need to. And honestly, this year, kicking it off with that research consortium meeting with just the consortium members was such a cool way to do it, because you did get to see that in the. In the sessions that everybody was talking about the same things. And I think for our members, and we'll have to hear them share their thoughts on it. So I don't want to speak for them, but I'm sure that felt validating that they had shared their lived experience as either patients or caregivers or parents themselves, who have had so many ebbs and flows and trials and tribulations and many milestones and many moments of success and many moments of Setback and major moments of setback. And so I think them having a chance to say, this is what we want to see happen in research, but then also see providers present that they want some of the same things.
I thought that was cool.
[00:18:21] Speaker B: And in symposium, to see Amber up there as a representative of the Family Advisory Council and to have everyone telling Amber, yes, you are an expert, we want to hear from you. We want to hear, hear from you all the time. You know, like, we respect you. And to have people coming up to them as they attended the conference and, you know, seeing them as experts and seeking them out as consortium members, that meant a lot, I think.
[00:18:55] Speaker A: Yeah, it did. And you could tell that they really embraced their leadership roles, too, during the conference, because even our chair, and we'll have her on, she was able to speak from her own experience as a child and then also her experience as a feeding therapist. And that was really powerful. And I love what you said about Amber because I feel like every time Amber speaks, and especially when she spoke at this conference, everybody is just like, speechless because she is so powerful in how she can share her experience, but also provide tangible things for the audience to think about in their practice.
And she just does it so gracefully, too. I mean, she was just such an amazing person up there to represent families, but also to call providers to think about how they're involving families. So we love you, Amber.
Anything else about the consortium?
We will definitely continue to keep everybody updated on that. We do have a lot to do. Haley and I are excited to do it.
[00:20:14] Speaker B: We're all excited.
[00:20:15] Speaker A: So excited to do it.
[00:20:16] Speaker B: But we're going to. Now we're going to go back and look at, you know, how things wrapped up with the consortium, and we're going to be working with leadership and then with the rest of the consortium membership, and they're going to be writing up the results of that meeting and we're going to get a publication ready and.
[00:20:37] Speaker A: Yep. And we'll disseminate it, too. So that not only is it, how can we as a consortium do this, but how can the rest of the research community for PFD and ARFID listen to patients and families?
[00:20:50] Speaker B: Well, and the practice community honestly, too, because this is a lot.
[00:20:55] Speaker A: That's true.
[00:20:55] Speaker B: It wasn't just a research list.
[00:20:58] Speaker A: No, no. There's so much more. That was, I think, the powerful piece of it was everyone on the consortium put through so many of the things that need to be thought about from an education lens, from an advocacy lens, from a public policy lens, and everything and so there's always a lot to be done. But that's why this community all working together is so important to do it.
I mean, we truly couldn't be where we are without the community that we have and the volunteers that we have and the leaders that we have.
And it's just so cool to see the leaders in consortium members and how and what they're going to do with this as we take this all to the next level.
So as we kind of narrow in our wrap up, we really encourage anyone to attend the On Demand conference. It launches March 1. It is available for two months. Something that we really try to do at Feeding Matters is listen to what our community is sharing. And we heard you last year and I think even the year before you said that a month was not enough time. The content was just too good. And so we wanted to be able to give you more time with that. So we extended it for an additional month. So you have two months to watch this content, which I think is a really exciting thing. And yeah, be part of this. Work with us. One of the coolest sessions that everybody loves to attend is symposium. And so you'll be able to get a sense of what that looked like in person. But know that you could still participate in symposium as you're participating On Demand. And symposium is about how are we working together to change the system, how are we getting loud, making sure that awareness is happening, that we're talking about feeding development, that we're talking about pfd, that we're talking about arfid. But how are we going deep in terms of what the research is looking like, how we're listening to lived experience, what education is happening? But then also how are we getting local, how are we making sure we're disseminating this good information, leveraging these resources, supporting early identification and all of that. And so I think everyone will really enjoy the symposium as well. But I encourage you to watch the entire On Demand conference because it's definitely a good one.
[00:23:14] Speaker B: I know, I agree 100%. And there's a lot of other content that you'll be able to get in the On Demand.
[00:23:22] Speaker A: Yeah, it's not access. If you were in person, yeah, all in person attendees could access the On Demand content. But it's not like you're attending a conference where you're just watching a bunch of people present live. There are so many sessions that are available on the platform that are specific to you as an audience member that's attending On Demand. And it looks just like conferences in years past when we've been all virtual, so that's really important to know too.
[00:23:49] Speaker B: Yeah.
[00:23:50] Speaker A: Yeah. Well, thanks for being with us. Even though we're all, we're a little tired and a little slappy happy from an amazing weekend of just, you know, colleagues and friends and amazing ideas and amazing educational content. We hope you enjoy it. And please know that we're a community and we're in this together. And yeah, we'll see you next time. Bye Bye.
[00:24:14] Speaker D: Wouldn't it be great if you could access some of the best sessions from the Feeding Matters International PFD Conference whenever and wherever? Well, good news, you can. Our On Demand conference lets you access key sessions and more on your own time. You'll get high quality recordings of sessions that discuss the intersection of food insecurity and feeding disorders, that explore how a holistic, multi domain view of PFD improves diagnosis and treatment outcomes, that identify actionable steps that will propel the field of PFD forward, and that answer the question what does success look like? During the Shannon Goldwater Summit for Change? All of these amazing on demand offerings and more are available for viewing beginning March 1 through April 30. We have great on demand pricing for families, students and healthcare professionals, including a Healthcare Professionals Group rate. Visit feeding matters.org conference to view the on demand agenda, see available CEUs and register today.
