Episode Transcript
[00:00:00] Speaker A: Presented by Feed Matters with host Jacqueline Peterson and Dr. Haley Estrom.
Feeding Does Matter.
[00:00:12] Speaker B: Welcome everyone, to Feeding Does Matter. I'm Jacqueline Peterson here with my co host, Dr. Haley Estrom, and we have Dr. Nancy Zucker today. Dr. Zucker is a psychologist and we'll share a little bit more about her work, but I'll share how we kind of started interacting with her. And Haley, feel free to, like, jump in here too, but I just went right into it.
Ready to talk about it. So we have, as you all know, done a lot of the navigating the overlap between the pediatric feeding disorder and avoidant restrictive food intake disorder diagnoses and really trying to figure out what's best for families and clinicians and how can we get the best access to care and ensure that research is working together and figuring that out. And so that's how we found Nancy was in search of who are the best collaborators and who are the best people that are looking into this. And Nancy's done a lot of research in ARFID and especially in that gray area of overlap. And Celia, anything before we jump over to Nancy?
[00:01:19] Speaker C: Well, we're really glad to be working with Nancy and she was one of our co authors on the US Based consensus on the overlap. So welcome, Nancy.
[00:01:31] Speaker B: Yeah, welcome, Nancy.
[00:01:33] Speaker A: Thank you so much for having me. I feel quite honored and pleased to be participating in this podcast. So it's been just a treasure getting to work with Feeding Matters and particularly Declan about these issues. So I just, I feel like I've just found, you know, it's kind of like when you find your besties late in law, you know, it's just been a lot of fun.
[00:01:58] Speaker B: Oh, wonderful. Well, you know, I, I think we talked about a lot of the different areas that we want to cover today. Do you want to share about your background, how you found yourself in this role and specialty and kind of what your research interest is?
[00:02:12] Speaker A: Sure. So, you know, so I'm a clinical psychologist, and then I'm a professor in the Department of Psychiatry and Behavioral Sciences at Duke University, and then on the university side in psychology and neuroscience, I get to have the blessing of being able to see patients and do research and then teach in a variety of formats, from young undergrads to teaching parents and this, that, and the other. So it's nice because it forces you to figure out how you going to. How to listen to lots of different groups and also how do you communicate about things to very different audiences. And really, the trajectory of my work really started with my clinical work treating the Eating disorder of anorexia nervosa, which is a quite severe and dangerous eating disorder. You know, one of the leading causes of death from psychiatric disorders and, you know, inherent in that disorder is just people who just are kind of at war with their bodies. Right. There's kind of no attunement to, to self. You know, it really is just like trying to kind of whip your body to conform to rules and expectations and this, that and the other. And, you know, and our outcomes were.
Could be so much better. And so just, it kind of led me down a path of asking questions about how, how do kids learn how to trust their bodies? Like, you know, what's kind of the origin story of body trust? And, and how do you raise kids so that they realize that their bodies are wise and strong? And who are the kids that are vulnerable to not have that, to have that relationship disrupted? And so, as you can imagine, it led me younger and younger and working with younger and younger people. So that's kind of the origin story of my work, led me to feeding problems that led me to pain.
[00:04:02] Speaker C: And when you say younger and younger, Nancy, where did you start thinking younger and younger?
[00:04:08] Speaker A: Well, right now, you know, so my work originally started off with adolescents, then children, then younger children. Now I'm at 5 and 9. I'm figuring by the time I retire, I'll be like, trying to talk to like, cells and petri dishes.
[00:04:27] Speaker C: Younger and younger.
[00:04:32] Speaker B: And so as you were pursuing kind of younger and younger, that's where a lot of the transition and the expansion of the feeding disorder of infancy and early childhood translated into arfid. Do you want to share your perspective or were a part of that work?
[00:04:47] Speaker A: Yeah, so, you know, the arid work, you know, I all like, you know, it's kind of where the, the roles intersected. Right. So is in my role as a director of the Duke center for Eating Disorders and as a clinician. You know, we were saying, you know, is an eating disorder set. You know, people were coming for eating problems, right, that had some kind of, you know, psycho perceived, you know, psychological behavioral component. And, you know, and so we were seeing these kids always, um, and they didn't fit neatly into, you know, psychiatric diagnostic classification. Sometimes they had a, you know, a failure to thrive diagnosis. They were diagnosed with all kinds of things like, you know, generalized anxiety diagnosis, you know, phobia diagnosis, all, all kinds of things. And we were treating them, and then we were having adults come to us with feeding problems that didn't fit neatly into diagnostic categories. And they had been Struggling with this their whole life, right? And now that they were a par. Who they wanted to be a positive role model for their kid or they're going for the job interview and didn't want to be able to. They wanted to be able to order off a menu and eat with people, you know, so all these kind of permutations were coming in. So, you know, just felt, you know, and we did the first study actually of. Of picky eating in adults. You know, pre arfid, we did. You know, it was a really fascinating adventure. Because of this, we decided to put, you know, put a survey together. We got a health journalist from the Wall Street Journal to put, you know, do a story about it, and we had a link to a survey. We just. Then we're just kind of waiting to see if anyone would take our survey, and we were hoping we get like 600 people. You know, we ended up getting close to 40,000 people and just kind of telling their story, you know, so just really Arfid felt like just was really speaking to a need and a gap in the psychiatric, you know, world in terms of capturing people that weren't being diagnosed and treated.
[00:06:44] Speaker B: Mm, that's so true. And I think especially as you think about as kids, they grew up into adults, and that's like, from our world. We've always been really, like, narrowed in on infancy and childhood and haven't been able to focus as much on the lifespan. And I think that's what I really liked about our work, too, in coming together is kind of that. That focus. Did you ever hear about pediatric feeding disorder before we connected or anything like that or what? What's been your experience and kind of knowing the. The. That there's. There was another field working on the same.
[00:07:20] Speaker A: Oh, yeah, always. Right. So, you know, so I had always had, you know, just great admiration and respect for the speech language pathologist, for, you know, for the occupational therapy. Like, the work that they were doing. I felt what, like, spoke my language. You know, the interventions that I developed were, you know, were very sensory focused. Right. About body focus. And so always felt a huge gap in my own knowledge about oral function, you know, about just the best way to kind of assess and refer. And that's always been a great interest. And, you know, and one of the things that's happened as a result of our work together, there's been more interest in those departments wanting to collaborate with me. So that's been fun, you know, so that's just been great. Right?
[00:08:02] Speaker B: That's so great to hear. What does that look like. Because I think that's hard to put into practice. Like, these fields have been operating in silos and especially even within the same institution, under the same roof, that it seems very challenging to merge and collaborate in that way.
[00:08:19] Speaker A: Yeah, I mean, I was thrilled. I mean, just last. Like, literally just last week, I was asked to give a talk to the Department of Speech and Language Pathology here at Duke, you know, thinking about referral pathways. Right. So we're just kind of talking about, like, what are the. You know, what are the ways to. That they're screening and identifying things that are. You know, that there's a significant psychological component and how do we facilitate that access and us doing better screening, you know, when is there a specific, you know, specific functional component that you know, and collaborate better? So we'll. We'll see where it goes, you know, in health systems. Health systems make it easier and harder to do these kinds of things.
[00:09:00] Speaker B: But it's fantastic.
[00:09:01] Speaker A: Yeah, it's such a great. Such a great group. Such a great group, so.
[00:09:07] Speaker B: Well, I feel like that's what we've always found in working with you as your just openness to collaborate. And I feel like that's almost a first step in being able to do something like that, where you're opening up referral pathways and working between departments and some of those things. So I've always appreciated that about our working relationship. I'll tell you kind of just like a personal story, Nancy, because I don't know if you remember this, but I had a cousin who I was, like, new to my husband's family, and she worked at Duke, and she was like, you've got to talk to Nancy Zucker. She's doing. Doing your same stuff. And I was like, that's arfid. That's so different than Feeding Matters work and, like, naively been, like, fully different silos, and that's how silos go and all those things. And then it's just so funny several years later to be like, yeah, we need to integrate this work and maybe pay attention a little bit differently back then. I could have done it faster, sooner, whatever.
I just appreciate that about our shared history.
[00:10:03] Speaker A: Yeah, yeah. No, I totally remember you telling me.
[00:10:05] Speaker B: That story as we started working together in terms of the consensus work and even taking us back to that first meeting. What are some of your reflections or just comments on that work and how you saw the need for it or what you saw it could do in the future for this work?
[00:10:27] Speaker A: Yeah, I think so.
For me, the lens that I was going into it with was the. The mental health field, you know, did not do a thorough enough a job on assessment. Right. Of kind of oral motor function. And so I kind of had a blindsided lens on. Okay, this is what I want to get out of this collaboration to make sure we've got our more thorough assessment pathways on the ARFIT side. But I was confused about the emotion behind, you know, some people's kind of passions about it from kind of coming from both sides.
[00:11:01] Speaker B: Yeah, sure.
[00:11:02] Speaker A: What are people afraid was going to, you know, or that we're missing and this, that and the other.
And you know, at first I naively thought, is this like. Is this like a turf war? Like, are people afraid? Everyone's getting into each other's areas that what this is about. But then, as you know, throughout the meeting in the consortium, what I came to understand, which I completely, you know, which I. Which again, sings my music, is that the feeding disorder folks really felt that, you guys can correct me if I'm wrong about this, that the, that those of us in the kind of the psychiatric disorders were not paying enough attention to developmental history and that there was a. And that there was these really rich learning histories that by just kind of treating it in the symptom, in the moment, that that was really going to compromise care and that that was a message that you guys wanted us to hear. That was another layer that I took about that in terms of just like that there's a, you know, there's a journey to this moment and in that, that, you know, and that. And, and really hearing that, I, I had like to think that I was paying attention to that, but I. But it certainly strengthened the urgency of that for me.
[00:12:15] Speaker B: That's so true. I don't know that I would have characterized it that way, but that's very true. And I remember you saying too, that you do always talk about reconciling past traumas as you move into treatment. But I would say as we were looking at how do you collaborate, one of the things that was challenging was yet looking at it face value, at symptoms that exist currently, whether that child is young or middle childhood or older or even an adult. It does leave out so much of the history and there is so much time and effort spent into thinking about how do these components turn into and develop within a child in all of the different ways, their skill development, their psychosocial development.
[00:13:01] Speaker C: And yeah, how did that problem develop? How. How did everything get to where it is today?
[00:13:09] Speaker B: Yeah, yeah, it's an acknowledgement maybe that.
[00:13:13] Speaker C: Yeah. How did the dynamics of the family reach that situation at the time? I think, like, the whole picture.
[00:13:24] Speaker A: It gets everyone in the mindset of, like, this, this. It gives people different expectations about the rate of change.
This is, you know, like, this has been something that's been, you know, learned for years and years.
Right. It's not going to be changed in five weeks. You know, like, is it, like, let's look at sign. You know, like, let's look at, you know, what are the signs of progress that we can look for and how do we go about kind of being on the alert for that? I think gave everyone more patience for what. I mean, we have a lot to look to learn about what, about what treatment trajectories look like. But I think it just gave people more realistic expectations.
[00:14:02] Speaker B: I think that's true. And I've also, as I've reflected in that time of us coming together, it was so interesting to learn about just the eating disorder world and how you all, as professionals and researchers approach research. Because there's like, a sophistication that comes with the world of eating disorders. There's just so many more psychologists trained in it. There's. There's an infrastructure in research that's very different than the feeding disorder world. And I think in that sense, it was also vastly different of like, kind of like showing up as an expert versus kind of having to fight for acknowledgement. And maybe that's kind of what you're saying too, of like, really wanting to acknowledge the history. That was something that I was recognizing within the room, too, of just like, as you're merging these worlds, they've had different experiences and how they've been valued and taken into account within the field.
[00:14:53] Speaker A: Yeah. I went to a talk last week about just kind of, you know, philosophy of science kind of stuff. Yeah, right. Talking about how any kind of scientific endeavor, there are different personalities. There's kind of lumpers and splitters.
[00:15:06] Speaker C: Right.
[00:15:07] Speaker A: There's people who want to group together and kind of classify and see the similarities around things. There are people who want to honor all the unique. Uniqueness and that each case is different and this, that and the other. And I think one of the, you know, the ways I think about it is, you know, in our mental health field, we've. We've been given the lumps, you know what I mean? Like, we were given the diagnoses, and while there's lots of variability, that kind of gives us this framework. But the more, the better, you know, the more sophisticated a clinician you are, I think the More you become a splitter. Right. You know, you're more like, but what about. And there's this. And how do we incorporate this? And we have to acknowledge this and so wonder if, you know, in the feeding world, because you guys are such brilliant clinicians about thinking about these, make sure that the kid and the parent feel seen that that's made diagnoses more challenging because you see the exception rather than the rule.
[00:16:02] Speaker B: Well, and that's also especially true for just research and treatment in general. And one of the things that we didn't mention when we introduced you was that you joined us at the research consortium prioritization meeting because we really wanted to have an ARFID informed eating disorder psychologist to connect to the work you do. So such a good job of listening and engaging in a patient and family centered way. And that's something that our consortium feels very strongly on, is the individualization of acknowledging the person within the research, of the person within the treatment. And that that kind of makes sense. Lumpers and splitters in that sense too, for sure.
[00:16:43] Speaker A: I feel like, you know, the pediatric feeding. So diagnosis is the great, like culmination of. Right. Of those two things. Right. It really is worded in a way that honors the individual, but it's a, you know, it's a classification. Right.
[00:16:55] Speaker B: So, yeah, it was kind of a lumping and then also a splitting and may need to be evolved over time.
[00:17:04] Speaker C: Well, and then pfd. I think it does go that step further to acknowledge the individual and the family in an intentional way because it allows for assessing the caregiver and the individual.
[00:17:21] Speaker B: Well, and that's. As your work has gotten younger and younger, did it change in how you interacted with the family and how you approach treatment? Or is it very similar in terms of like working with adolescents?
[00:17:35] Speaker A: Yeah, that's so interesting. You know, I had always started with parents in part because the original work that I did in graduate school was, you know, my first kind of formative clinical experience was working at an inpatient hospital in Baton Rouge, Louisiana, when we, you know, so we basically, we would get, you know, referrals from all across the state of Louisiana. And, you know, and the kids would do really well, you know, in a structured environment with lots of support. And, you know, and then you'd kind of see the look of just fear and horror when the kids were getting discharged to home, you know, that the parents didn't feel ready or tools to be able to help their kid outside that. And, you know, they'd always already felt that they failed and all that sort of thing. So that was kind of like the most. Yeah. Telling clinical thing to address first off. So parenting group skills based groups had always been my initial research passion. And using them. Right. As role model, you know, for the self trust piece. Right. Teaching that as a. As a role model for and for the sake of their kids.
[00:18:41] Speaker B: Well, and that kind of does dovetail a lot into what your work is. Do you want to share a little bit about kind of your philosophy and how you approach your research or anything about your current. An active clinical trial?
[00:18:53] Speaker A: Yeah. So, you know, so I'm a treatment developer, right. So I just didn't really. I just really love the creative process of trying to figure out how to treat things which, you know, I still make things way too complicated in my. My intervention. You know, there's an art to simplify. But you know, and the theme throughout all my interventions always has always been this kind of built. This building body trust. Right. With the focus on, you know, reading body cues are formally interoception like how do you teach kids? You know, that then it really comes from the early attachment literature, which is speaks your alls language, which is that when you have an. An infant who is dependent on a caregiver to survive, right. This back and forth communication that happens. And a caregiver has to figure out how to decode the communication signals of an infant and respond and you know, and through this back and forth, right. According to attachment theory, right. You know, there's trust develops and the child feels safe. And the child with that safety feels the ability to explore and launch. And there's a million things that can go wrong. You know, in terms of the dyadic interaction, in terms of, you know, poor, you know, trouble decoding trouble, difficult, diffuse and confusing communication signals on the part of the infant. You know, just like all the million things that you guys study and work with. And so it. That became a really useful metaphor though to think about self parenting. Right. So at some point, right. Kids have to learn how to do that themselves.
[00:20:23] Speaker B: Yeah.
[00:20:24] Speaker A: And to figure out how to read their bodies. And so taking it from the dyad to the person is a story that people get. Like how when people would come to me and say, like yeah, I just want to be more confident and you know, and I would say like what does that even mean? Like what is. What does that mean? You know, and what does that look like? And I just kind of landed. And that's. That's about like trusting yourself. And it's about like knowing yourself. And it really comes down to this tuning in and being responsive rather than like an anorexia where you're just demanding that your body conform to a certain set of rules or expectations. So from that all my treatments develop. And these treatments, you know, started off with a parent kind of coaching model where I was training parents to be more responsive self parents so that they could be a role model for their kid so they can make adulthood not look so scary, so that they had more resources to manage their child's disorder.
And then, you know, dabbling in doing it for the adolescent with anorexia. But really took me to more formative early stuff. Looking first at kids with pain for whom being scared of their body is kind of par for the course for some because it's, you know, they're just look on the lookout for painful experiences. And then led me to kind of take the same model into ARFIT and see how it fits, how well it kind of doves tails. So kind of piecing together all the parent piece with the body focused piece is kind of where my ARFID interventions landed.
[00:21:56] Speaker B: Yeah. And you use a lot of trauma informed practices within your work. You want to share a little bit more about.
[00:22:01] Speaker A: Yeah, absolutely. For a person to be able to make a change, you know, will kind of willing and able, right. They, they first have to feel understood, right. And one of the things that you always see is like, you know, particularly I'll give an example of you have a teenager with arfid, you know, they've struggled with eating their whole life, let's say. And they are able to because of a series of circumstances and skills, right. Get to a moment where they're able to try something new and they actually immediately like it, right. And their parents are like, you see, I told you.
Right. You know, if you just would that so Mrs. Right. Mrs. The boat on so many levels about the series of events and, and skills and capacities and that how to get to that moment. So that was, that was probably like the kind of a triggering event for me about the need to really make sure that this journey to this moment is really seen and heard. And then the, the flip side of it was, was really just seeing, you know, really just seeing parents reactions to, to feeding their child, right. Just you know, parents describing, you know, breaking down in tears, you know, when they're making their kids lunch, you know, and just, and having, you know, just such sadness around, you know, feeding their, their child. And so this, you know, this need to start off with really understanding where a person has been and really recognizing that with, you know, when your kid is not eating enough or well, how traumatic that is and that it's constantly re triggered, you know, thousands of times. And that, that, you know, and to think about what that would feel like and to be reached, re traumatized. Re traumatized. Re traumatize and to be able to just, you know, maintain equanimity and that is impo, you know, impossible. And so that really giving voice to that is a, I think, a crucial, you know, piece of any treatment for ARFID and any, you know, pfd.
[00:24:05] Speaker B: Yeah. And that's, and that's what we found within our family support programs and within the consortium itself too, is in supporting families through a journey. There is so there's still so many opportunities in which they're going to be re triggered and how can we as an organization support them being activated in that way and going through that? But it was also really powerful for Haley and I within the consortium when we were first forming it. In trying to be aware of if we're talking about research, treatments and we're talking about CER for PFD and ARFID with patients and families themselves, you know, what supports and what scaffolding do we need around this consortium? Because we know that it's not like we can just set aside that re triggering is going to not happen like it will happen. And we just have to figure out how we're going to approach it and support everybody through it.
[00:25:01] Speaker A: That's why I love the. The work that you all are doing in the consortium to develop these. Collaborate. These collaborative treatment models.
[00:25:09] Speaker B: Yeah, it's really amazing work and we just appreciate you being there to be part of the conversation. What was like that for you in terms of like meeting a group of patients and families that's working on this sort of thing? What was like your first. You didn't have a lot of context going in. You are so good about just showing up.
[00:25:27] Speaker A: I thought, I mean, I thought it was, you know, amazing. I think every, you know, I think, you know, everyone was just like working so hard to be respectful. Right. And, you know, and, and so, you know, and, and I thought that was just amazing, you know, just a beautiful. It was very inspiring, you know, and so I was, you know, it's great to have these, you know, work groups where you're hearing things and everyone kind of. And I think that, you know, providers, you know, it's on us to be the, you know, we're not the experts, you know, and for say you had a room full of people who, I think got that, you know, that people are the experts of their own experience. And so for us to, you know, shut up and listen, I think was pretty well carried out for the most part. You know, we have our moments, of course.
[00:26:10] Speaker B: Yeah, that's, I mean, that was, for us a really important factor was the acknowledging and being intentional about the power differentials and the fact that people who are used to being the most powerful people in the room, the, often the clinicians and having the expertise academically. It's a very different room in this regard in the sense that the experts and the ones with the power should be the families and the patients themselves.
[00:26:33] Speaker C: Yeah. In academic settings and in practice settings.
[00:26:36] Speaker B: Yeah. Sorry. Academic and practice settings. Right.
[00:26:38] Speaker C: So sit back and, and listen, please. Yeah.
Bear with us. We're all, we're all learning.
[00:26:47] Speaker B: Well, anything about your work or the future of arfid that you want to talk through, Nancy, that you maybe haven't talked about yet?
[00:26:55] Speaker A: Yeah, well, I think that there's, you know, there's just, I mean, there's just so much to do. Right. You know, which is, you know, exciting. But in, in terms of, for me, you know, giving parents good advice about, like, what practicing looks like, you know, like, how do you, how do you make this practical for people? What's the, what's the best way to practice at home? You know, you know, we, I give lots of advice about that based on kind of learning theory, but none of it is, have I systematically tested, you know, like, you know, when do you start having a kid try food at a meal? Like, when is it ruining the meal and when is it, you know, becoming, you know, a natural exposure that, that adds to their ease in eating socially? You know, what's the, what are the decision points for that? I mean, just like, as one small example of which there's like a million questions, right.
Have this clinical trial that's been going on, you know, that's been looking at a more kind of parent focus and then more of a kid body focus intervention. Both to two interventions that I hope will be proven to be effective.
I feel like those are the, like the toolbox. But then the art of implementation, you know, is kind of the next frontier about, you know, how do you make it this. Maximize the effectiveness of each of these things and helping parents really do this and helping the kids really do this.
[00:28:17] Speaker B: Yeah. And there's just so much that needs to happen in, in that next frontier, and that's what I think. I, I think I was most excited about your work in your clinical trial because it is such a large scale effort in looking at a population that hasn't had as much of a focus in the research.
[00:28:39] Speaker A: Yeah, it'll be, it'll be interesting to see what happens.
[00:28:42] Speaker B: Yeah, that's true. True researcher. We've got to wait till the end.
[00:28:48] Speaker C: I love it.
[00:28:50] Speaker B: See, I came to this work not being a researcher, so I'm still learning in my own research journey right alongside the consortium members.
[00:29:03] Speaker C: It is exciting and I love hearing about work that's being done, especially promising studies like your own, Nancy. And that's the thing that we've been talking about with the consortium and with the list of things that they're coming up with, with the prioritization is that we're finding that there's so much to do with the research roadmap and that they're all so motivated and excited and as they're all realizing how much there is coming to do, try not to let them feel too daunted by it. At the same time, you know, like it's a marathon, not a sprint. We're not going to boil the ocean. Right. But, but like which buckets do we want to address first?
And that's why we have to do the prioritization and then choose some things.
[00:30:07] Speaker A: This was really hard.
[00:30:09] Speaker C: Right.
[00:30:11] Speaker A: I had like, I really was struggled to, you know, to put. Because everything that you all listed, I was like, well, that's important, that's important, you know, important to rank order them was just like, it was like, well, what has to come for, you know, you know, what, what is needed so that the later things can happen. So I started thinking about it like that and you know, so.
[00:30:31] Speaker C: Right. So we can share the map so others can maybe go along the path.
[00:30:37] Speaker B: Yeah. I do think we, because we'll, we'll have to share this work. There's just so much to do that everybody needs to kind of be part of it and hopefully they are open to hearing what the research consortium is putting out there as certain priorities.
Because you are so involved in the research. What is some interesting research that you've interacted with or read recently that you think would be worth sharing within this community?
[00:31:03] Speaker A: Yeah. What I've been focusing on lately is, you know, just learning more about patient preferences, you know, in, in terms of, and what is, what is personalized care look like? And I have, you know, I haven't read anything that's given me the answer to that. But it, but in terms of just like thinking about if we're going to be serious about Kind of personalized care. What kind of agency do people want to have in their treatment? Right. And even that is a, you know, is a question that could be really important in designing treatments. Like, some people will say, I just want to go to the doctor and I want him or her, them to tell me what to do. Like, I want them to tell me what the best path is and this, that and the other. And others say, like, well, I want to be educated about all the options and I want to be given the choice, you know, and so just even things like that I've been trying to kind of just read about and say, like, how do you study that and how do you design studies to incorporate that and the, you know, is giving someone agency to design their own treatment? You know, is that an option? That's important in, in and of itself. You know, especially when you think of like multi component interventions and things.
[00:32:08] Speaker C: I wonder if there'd be something in common with nursing care plans in that way. Because I mean there, there is, that.
[00:32:16] Speaker B: Has to be very similar.
[00:32:18] Speaker C: I mean, because we, you know, you're supposed to do like a learning, like how they learn best. What kinds of things do they want to know with their treatment? Like, do you learn best visually, auditorily? Do you like to have reading materials? You know, what, what do you want to know? What are your religious preferences? You know, all those kinds of things when they're receiving care?
[00:32:41] Speaker A: Yeah. I mean, all those things. Right. Like not systematically integrated. Right. So obvious. Right. So brilliant. You know, like, in terms of, like, of course these are relevant things, but we don't, I don't feel like in the mental health field those are, those are systematic or regular considerations and what, and how powerful the fit if it were.
[00:33:00] Speaker C: Yeah, I mean, that's just nice basic ways to have some agency in your care.
[00:33:05] Speaker A: Yeah.
[00:33:07] Speaker C: And to integrate education about your care.
[00:33:12] Speaker A: And make people feel seen and heard, you know, I know like, you know, one, one stellar example that's getting, getting along those lines is the, the, the peace program in the UK where, which is like a autism and eating disorder kind of inpatient unit where they're really trying to have, you know, patients fill out like a passport of, you know, what are, what are your sensory aversions, you know, what kind of, what, what do you want the environment to be like, level, you know, to the point that some of these things are controllable in hospital, you know, some are not, but at least, but you could control whether you wear earplugs, you know, and things like that just give, give patients the sense of, like, you see me, you know, you care about my experience, you know, you can lower the anxiety level when people feel like they have some control over their environment.
[00:34:01] Speaker C: Yeah. Do you need an interpreter? Do you need an assistive device?
[00:34:05] Speaker A: Yeah. So it's interesting to think about how to take that mentality in terms of a treatment zone.
[00:34:13] Speaker B: Love that. Well, it's just been wonderful being with you today. As we move to close out today, we asked the same question of everybody, especially because a lot of the reason that Haley and I started this podcast was because we were starting the consortium and we were building training series about research anyway, and so wanted to bring it more to the masses. But we knew that there were. I mean, there's so many podcasts out there that we really wanted to make it about a specific niche, and that is that patient and family centered research, especially looking at it from the PFD and ARFID lens in this field in particular. And I'm going to let Hayley ask.
[00:34:50] Speaker C: The question, what are the barriers that you see in having research be more patient and family centered, and what do you think we can do to overcome them?
[00:35:03] Speaker A: Yeah, I think it's a. I think it's a profound question. You know, I think it's. What's the best way to honor voices? I think, you know, so it's, you know, you know, when you. When you have kind of patients and families, you know, telling, you know, telling their experiences and, you know, in there and they have an n of 1.
I think researchers can, you know, do not know, like, how to weight that.
Right. You know, and so, you know, how do you go about kind of integrating voices in a way that everyone's, you know, the messages that they. That families think are so essential to a treatment are being incorporated. You know, like, how do you balance the individual with, you know, the treatment that's been tested and then has evidence that makes insurance companies want to pay for it and this, that and the other, and that. That delicate balance between those two, I think, is really, really challenging. And so do I have the answer for that? No. I mean, I know that, you know, the more, you know, the more we do it, the more we're gonna. These are just. These are methodology questions. And, you know, and the more voices you hear, you know, the more, you know, the more you get consensus about things. And so all the work that you guys are doing, I think, is the. The way to go about it is, you know, how to, you know, hear the main. As many voices as you can, you know, come to common understandings and figure and for us to figure out the balance between common elements and personalized elements in a treatment, like what are the essential components that we think have to be there and what are the elements that are more up to personalization and so really exciting directions.
[00:36:50] Speaker C: I like that. The balance between common elements and personalized elements.
[00:36:56] Speaker B: Yeah.
[00:36:58] Speaker C: Taking notes.
[00:37:02] Speaker B: Just give me a lot a lot to think about. Nancy, that it is that n of 1, especially outside the research world. You're used to giving more weight to an n of 1, but oftentimes that's not viewed in that same perspective within research. And so I think what we're hoping to do at this consortium is build that base up so it is more accepted and maybe a larger weight on it. And like you're saying, take out the pieces pieces that are the individualized pieces versus what's congruent with everybody. Thank you so much again for being here. Really appreciate your time. We will see everybody next week.
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