Family Centered Care

[00:00:01] Speaker A: Presented by Feed Matters with host Jacqueline. [00:00:06] Speaker B: Peterson and Dr. Haley Estrom. [00:00:10] Speaker A: Feeding Does Matter. Hey everyone and welcome to Feeding Does Matter. I'm joined by my co host, Dr. Haley Estrom. Hi Haley. [00:00:21] Speaker B: Hi Jacqueline. Happy to be here. [00:00:24] Speaker A: Wonderful. Well, a lot of the work that we are doing with the Family Centered PFD Research Consortium is working on building capacity, capacity for research in this field to make it more family centered. And I, I really feel like you're like the living embodiment of that. Like you took a personal experience and built capacity for more research and, and really giving families a voice within a space that oftentimes is challenging to, to hear from families in, in the academic world and the research world. And so you're, that's why I'm so proud that you're my partner in this project and even on too. [00:01:01] Speaker B: It truly resonates with me. I, I mean if anything ever has, this, this one feels like a home run. [00:01:08] Speaker A: Yeah, I agree with you. I'm so excited to see what they do with it. They're amazing as a membership and we, this is not a project driven by us. Like we had the ideas for it. We wanted to start and we wanted to give everybody the tools, the space to learn, the grace to learn. And we'll be here to be guides and strategic advisors. But it'll be really cool to see what comes of this. So I'm so excited even for next year and the years following now. We picked the name Family Centered PFD Research Consortium intentionally after kind of throwing out many different names. Why was Family Centered really important to have as calling it a research consortium? Why was the Family Centered piece really an important distinction? [00:01:57] Speaker B: Because of what Family Centered truly means. And it is a term that's thrown around a lot, but what it means at its core is, is very important. [00:02:08] Speaker A: Yeah. Yeah. I do think that it's thrown around a lot, I think. And there's many terms like this in the medical world that are just used as almost buzzwords of the moment. And that feels like Family Centered might be that. But I'm hoping it's a way that'll allow us to get closer to being more family centered. [00:02:30] Speaker B: So it's really important when we talk about Family Centered care to talk about how you yourself define family. And this is important for providers and for the individual. So a family really is defined by who comprises that family. It's defined by who makes it up. It's really about having a shared culture and shared relationships and the people within it are interdependent. And when you Think about it. The states of health and illness that occurring within that family and the relationships are going to impact the system, the family system. And they always. In the, in the family literature, when you study family systems, they talk about thinking about it like a mobile. And when you, when you tap any part of a mobile, like one of those hanging things. [00:03:23] Speaker A: Yeah. [00:03:24] Speaker B: Times above baby beds. When you tap any like little object in a mobile, the rest of it will spin. Right. Interdependently. So you think about a family and the relationships within it like a mobile. Okay. [00:03:38] Speaker A: Yeah. We are clearly so in, in interdependent. And one thing that happens affects the rest of us. [00:03:45] Speaker B: If you push any one relationship in one kind of way, it's going to affect the whole system. [00:03:52] Speaker A: Yeah. [00:03:52] Speaker B: So any kind of caregiving relationships or any sort of impact will affect the whole thing. And those caregiving relationships might be new. Like if there's a new illness or any kind of burden, any kind of. Anyone like talk about any. Everything being negative. Like some, some things might be positive. And there, there's always some kind of good that may come from something. You know, not everything that comes from having PFD or ARFID is bad sometimes. A lot of families talk about how it brings them closer together. You know, we don't want to always focus on the, the hardships and the burdens that come from things. A lot of times people talk about how it brings them closer together or that, how they find the good in things. [00:04:43] Speaker A: Yes. [00:04:44] Speaker B: And the things that need to be celebrated, these also need to be focused on. [00:04:48] Speaker A: Agreed. [00:04:50] Speaker B: So this is important for family members and healthcare providers to consider. But how do you define family? It's also important for researchers to consider. [00:05:02] Speaker A: Yeah. If we're going to throw that term around, I think it is important. [00:05:07] Speaker B: Yeah. What makes you feel most seen and cared for too, in the healthcare setting? I always talk to the nursing students about this. What makes you feel more most cared for? What makes your loved ones feel most cared for? What would you want for them? What would you want for yourself? Right. [00:05:27] Speaker A: Yeah. [00:05:27] Speaker B: And if you are a healthcare provider, you likely are using features of family centered care already in your work. Things like offering choice or recognizing bits of progress and celebrating that, or helping a family member of a patient to identify resources for a child or an adult, or partnering to set goals. But you know, unless they're systematically and intentionally practicing that every day, every time they go into work and they're evaluating the outcomes of that, it's not true. Family centered care. And I'll just let that sit There. [00:06:26] Speaker A: Yeah, I think that's a really big almost call to action because I think we're so used to making small tweaks to things. And I think that's especially what's been the case for what intervention looks like for any one of the various domains and professionals and disciplines that work with children with pediatric feeding disorder. And I do think that many probably are thinking that they do family centered care, but are sometimes not knowing all of the systems at play, not knowing even like the systems that parents are interacting with, like the intake forms and some of the really challenging barriers that a family has to overcome in order to even get in a room with someone or even a room with many people, and how intimidating that can be. But I love the idea of it being a practice, and I love the idea of it being an intentional practice. I really think that those are two key words to how we make these small iterations grow into system change over time. [00:07:36] Speaker B: And so here are the core concepts of patient and family centered care. And this is from the Patient and Family Centered Care organization website and with Pediatrics. Patient and family centered care is family centered care. [00:07:56] Speaker A: Yes. [00:07:57] Speaker B: Yeah. [00:08:01] Speaker A: Yeah. And I know Feeding Matters has really looked to this organization, the pfcc, for how to even talk about family centered care and how to really make sure we're embodying what we say. But they are the experts. And so they do have these core concepts that they've put out that we all can follow. [00:08:25] Speaker B: So the first is respect and dignity. [00:08:30] Speaker A: Yeah. [00:08:30] Speaker B: And so it's respecting perspectives and choices. And that's values and beliefs and cultural backgrounds incorporated into care and planning. It's information sharing. And that goes both ways. Between the healthcare providers or practitioners and patients and families. It's participation, and that's full participation. So patients and families are encouraged and supported in participating in care and decision making at the level they choose. So that means they don't have to. [00:09:12] Speaker A: Yeah, I think that's a really cute part because I think we're like, we've got a lot of decisions coming at us and many different experts to listen to that. It's really challenging. [00:09:22] Speaker B: Yeah. So if there's overwhelm, if they're kind of indecision, paralysis, you know, then absolutely, they don't have to because there is, you know, often some level of trauma. You know, there's. There's things going on. Maybe they're not capable, maybe they're not ready. [00:09:38] Speaker A: Yep. [00:09:40] Speaker B: But they've been given the option, which is so important, and collaboration, again, both ways. And they're a valued member of that team. So collaboration, patients, families, healthcare practitioners and healthcare leaders collaborate. And this is more than just in a patient bedside care. This is in policy, program development, implementation, evaluation, facility design, professional education and in research as well as in the delivery of care. So this is in things like pcori, this is in things like this program that we are having. [00:10:29] Speaker A: Yeah, it's every piece of it. It's not just, you know, one intersection. I think that's the most challenging thing when you think of things from a systems lens is there's so many components to the system and they all are interacting. [00:10:44] Speaker B: Right. And so I mean it's collaboration from the ground up in all things related to where you know, to what matters to patients, patient and family centered care. So they should be where the decisions are being made that affect them. It's with them, not to them. [00:11:06] Speaker A: Yes, 100% with them. And so here we are defining family centered care. And I think before you even define family centered, like you pointed out, it's how do you define family first? And yeah, there's, there's so much I think that needs to happen for our own self reflection. Like even you asking me those questions of like how do you define family or how do you feel cared for in a healthcare setting, you kind of go your own experience first and whether you're a, a parent, whether you're an adult that's seeking care, whether you're a healthcare professional that's giving care, those are questions and self reflection questions that I think are still really important for ourselves to be asking ourselves. And I'm not a clinician. I do, I do have a child, children. But asking that of myself is really important. Even as a PFD advocate and community member within this feeding community. [00:12:07] Speaker B: Absolutely. Yeah. I mean you're another key stakeholder and that, that's the thing. People don't have to be healthcare providers, they don't have to be researchers to be important. [00:12:24] Speaker A: Yeah. [00:12:25] Speaker B: In making these decisions. [00:12:27] Speaker A: No, I think it's how we're listening to each other and if we're really listening to each other. [00:12:37] Speaker B: Yeah. [00:12:40] Speaker A: So what are the biggest challenges that you see in making pediatric feeding research more inclusive of family perspectives and how do you think we can overcome them? [00:12:49] Speaker B: I am really into measurement and how we measure things. I have seen in early intervention, when they measure family centered care, they measure if families have been given information about their rights and if they're satisfied. I think that we need to be measuring family centered care more accurately. [00:13:22] Speaker A: With your measurement hat on, what do you think would be more important to measure than some of those existing measures. [00:13:32] Speaker B: Were they given opportunities to set goals that they feel were important? Were they given opportunities to share their concerns? Were they given opportunities to have all the information that they wanted? Basically? I mean, did they feel, you know, the core concepts? Yeah, I would want to make sure that it aligned with the core concepts of patient and family centered care. [00:14:04] Speaker A: Yeah. Using this as the framework to which those questions are being asked and that satisfaction is being measured, I think that. [00:14:13] Speaker B: Makes a lot of sense because I think satisfaction as a whole as a measure might just come out with likability of the providers or you might be measuring billing or something else. Like it could be something entirely different. [00:14:33] Speaker A: I could see that for sure. I could see even myself answering a patient satisfaction score. I am probably thinking about how well along did I get with the healthcare provider and did we, did we jive? Which I think in some sense is like, were they listening to me? Did we get along in that way? But likability is another factor of just like, oh, they are likable, so I'm going to score them higher. [00:14:56] Speaker B: Or it could be the cleanliness of the room or it could be parking or, I mean, it could end up being many different things. It could end up with some other noise, like you don't know for sure what you're getting. So, Jaclyn, what do you think the biggest challenge is for making? Yeah. [00:15:19] Speaker A: I think the biggest challenges are that on the healthcare side and on the research side and intervention side, we are looking at a moment in time and on the family side, we are looking at a lifetime. And so when we're trying to measure the success of an intervention, I always think that we need to be looking at it long term. And I think we are starting to see how challenging it is when you have these poor experiences around food and meals time and time again, and how that's making the psychosocial impact so much greater that if we zoom out a little bit and we think about it from more of a lifespan, that we may be thinking about it from a different perspective. We may be more inclusive of learning more about what trauma exists and what does that do in the long run. I really like the idea of focusing more on longitudinal studies and being able to understand what's happening in the long term, because there's different things in the short term that work really well. And I think the more we can ask those questions, but how can we build on those questions and see them more over time could be really valuable. So really appreciate you spending the time and feeding definitely does matter. So thank you. Yep. [00:16:56] Speaker B: Thank you. [00:16:58] Speaker A: Feeding Matters Infant and Child Feeding Questionnaire was developed as an evidence based tool to promote early identification of feeding disorders. Developed by internationally recognized feeding experts, this online questionnaire, available in both English and Spanish, can help you better understand your child's feeding differences and needs. Take it online for free [email protected] that's questionnaire Feeding Matters. Org or type ICFQ in your search bar.