Supporting Family Engagement

In this episode, our host Molly Martzke and guests Bailey Perez and Vicki Hunting delve into the critical importance of family engagement in revolutionizing the genetic healthcare delivery system. We discuss how active family involvement can lead to more patient-centered, equitable, and effective healthcare practices. Tune in to hear expert insights and real-life examples of how supporting family engagement can drive significant and lasting system change in genetic healthcare.

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Welcome back to Linked Together, a Family Center podcast where we embark on a journey of driving systemic change within the genetics healthcare delivery system. I'm thrilled to kick off season two, where we will mix it up a little bit by having different hosts each episode. I am glad that you are joining us as we navigate the ever evolving landscape of genetic healthcare, bringing together diverse voices and perspectives. So get ready as we embark on this transformative journey together. Welcome to Linked Together, a Family Center production. Welcome. So excited you guys could join us today on linked together. I'm Molly Martzke. I'll be your host today, and today we will be talking about supporting family engagement, what that means, what that looks like. I'm joined today by Vicki Hunting as well as Bailey Perez. I think we're just going to dive right in, get started, see what you guys have to say about it. So, Vicki, I was wondering what brought you to the conversation today? Well, I think that this whole topic of family engagement really hits home to me in the work that I've been doing at Expecting Health and even beforehand, making sure that families voices are heard and integrated into the work that we do to help us build the systems that will that work for us as families. Okay, great. I can't wait to learn more about what you have to say about that. And so, Bailey, I was wondering, what brings you here today? What are you thinking about? About supporting family engagement. Yeah. So, same as Vicki is this topic really does hit home both with what I've seen here at Expecting Health. But what I I've also seen both personally, through my own experiences and through other work experiences, is just how important it is to have that family voice in the conversation. Yeah, it really is important to have that family voice there. And so then I think about, too, like, what I really kind of wanted to focus on today was thinking about, what do we do? How do we support that? How do we make sure that, that we really have that family engagement as part of that system's change? So, you know, when we think about that, it brings back to me sort of this question of, well, what do we even know about supporting family engagement and systems change? What kind of research is out there? What do you guys think about that kind of stuff? This is Vicki, I think that what we've learned along the way is that having families engaged and being together promotes collaboration and communication among each other, among their peers, and helps them with their communications with professionals or educators, and also helps us to form our stories as it relates to shared decision making, which all of these things will lead to designing better healthcare systems. Yeah, and this is Bailey. So, like, what Vicki was saying is, while we have all personally seen this and a lot of people in the family engagement world has seen this personally, especially if you are part of it individually or you work in it, there's not a lot of research out there about it, though, because there's not a lot of published data really focusing on the importance of family engagement and why it should be prioritized in this world. Yeah, no, and again, this is Molly, and I agree with you, Bailey, on that. I think that there is this idea of people talk about how it's so important, but really, there really hasn't been a lot of research, a lot of data that comes around. What do family leaders need to really be actively engaged? I think there's a lot of assumptions. There's a lot of assumptions, whether it's from those of us who are part of that system and stuff like that, that's working towards that. But I also think, again, that's an opportunity for the field to really kind of look at stuff like that. Yeah, absolutely, Molly. And I think another part to that is just the fact that families are, they don't know about opportunities. And as they become engaged with each other and with other stakeholders in the system, it helps them to understand and know what opportunities are out there. You know, there's a lot of families out there, too, that may have children who are medically compromised. And I think that sometimes organizations might feel like that they're too busy or have too much on their plates, and so they don't engage them. When, if they engage them and let the family decide how much they can participate, there would be better outcomes because the family knows the situation and how much they can give. And so if they're not asked, they don't know. Yeah, Vicki, I think that's a really great point. Again, I think people do make that decision a lot of times for families and say, oh, they can't, they've already got too much going on and stuff like that. But what happens is then you really get that sense of power from those who are doing the asking and they're the ones who are deciding who gets the opportunities and who don't. So that is a great point, I think. Yeah. Another thing that has been happening in the system is that there's a lot of information out there about what to do to get families engaged. And where we're finding in the work that we've been doing is that there's not a lot of information about how to prepare families to get them so that they can be engaged. I don't know of very many families that are individuals who are involved in this, in system work who came right into the system level. They began at a different level with their family, learning about their family's needs and then their local community, and then got involved in systems work in that way. So I think the work that we've been doing lately around making sure that families are prepared and that we prepare them to be involved in systems work that helps them to learn, build their skills and self efficacy to, to become a leader in systems. Yeah, Vicki. And that's a really great point. And what we've seen a lot recently, especially, is some of our family leaders that we work really closely with here at Expecting Health and with the Family Center have actually really pointed that out, saying how, you know, it wasn't until people really, like, invested in them as a family leader to help them grow as a family leader is they didn't come into this work being where they are now. And a lot of professionals are wanting that type of family leader ready to go right out the gate. But that's not how they started. That's not where their journey was, is it involves people investing in them and giving them the opportunities and the training and teaching them how to talk to other professionals and show up at other meetings and giving them the opportunities, either financial or just letting them have a seat at the table to be at those meetings and learn and grow. Yeah. You know, I've seen both. Right? Like, I've seen this idea of family leaders that grow, and then they start to, for lack of a better word, start to get this professional sort of, like, layer to them. They understand the acronyms. They can start to say what the nuances are things, and they understand sort of the system at that level as they've been around. But, but then I feel like sometimes there tends to be a pushback about that, about, oh, they've lost that sort of family leader aspect. Right. That, oh, we want a new family to come in. And from my perspective, it really takes both. It takes, it's that continuous taking of additional new families coming in, understanding what's happening, but it also takes that person who's been there, who's met a lot of family leaders, who's collected that stories, who can kind of see some of where that, where that's happening and feels comfortable sitting at that table and offering viewpoints. Yeah, this is Vicki. That's an excellent point. And I think what, back to the question about what we know, and what we think is needed is that the organizations or other stakeholders that aren't patients or families or individuals with a condition, they need to help prepare families. Because when families get involved in this kind of work, they feel valued and respected, and that builds trust. And so bringing new families in is good, but the organization also needs to spend some time thinking about how they do that and how they make those new family members feel part of the group and build that trusted environment. So I wanna bring us back a little bit to where we started, where we talked about, what do we know about family engagement and supporting family engagement and systems work. I know both of you have been really involved in a project that the Family Center took on around trying to understand what families need, as far as in that genetics, healthcare delivery system specifically and stuff like that. What do you think? The couple of big takeaways from that that we learned when we sent out that survey and we did that report. And again, if anybody's interested in that, they can certainly find that on the website and check that out and look into it in more depth. But were there any big takeaways that you found from the report that you thought, oh, yeah. Or does it always feel that, oh, this is what we know, but it feels basic to us, but maybe it's eye opening to others? Yeah, this is Vicki Hunting. I wanted to talk a little bit about the survey. This was initiated a year ago. It started out with a pilot group, and we wanted to gather information about what families felt like they needed and wanted within the genetics healthcare delivery system. What is it that they needed that they didn't get? What will help them further their work as a family leader within the system, we had demographics, and so the questions were designed about that. We asked them about what made them most proud of what they're doing as a family leader and what gives them the enthusiasm to move forward with this work. So it was originally validated by a larger group, and then we sent it out to a larger group that provided their input virtually and then collated all those responses. So it was initiated by a group of 30 family leaders and then shared with the rest of the genetic health care delivery system. I think there's a lot of that. Some of it was what we learned was validation and that what we thought we understood is true. But I think, again, we talked about it earlier about making sure that families are prepared. So how do you prepare a family? Families are saying they want training and educational opportunities. Maybe that's something about how they tell their story. Helping them get comfortable with what they're doing. And by providing these opportunities for development for family members, it again builds their confidence. It helps them learn more about the system. So creating opportunities for families to come together with each other and with other stakeholders begins to build that level of trust and builds peer to peer relationships. When families come together and their child doesn't have the same diagnosis, they're still on a journey of a child with special health care needs. And so there is some camaraderie in that, and they find those relationships are built from that being on a journey. Like what Vicki was saying is a lot of what we saw in the report was families really wanting that training and those types of opportunities. But we also found that there's a lot of barriers which we kind of knew about to begin with. But some of the barriers were like financial barriers. A lot of the families are saying that they're still not being paid for their input, despite that being a conversation that's been happening for years. So that's always a really big barrier. Some of the other barriers were transportation and childcare. And so you can't expect these families to have to miss work and not get paid and not have childcare and not have any way to get to these different types of opportunities and still participate. This is Vicki. Absolutely. Bailey. I think, you know, we think about inviting families to present at an event. We always need to think about how they can be compensated in one way or another. When meetings happen during the day, the professionals that are in the room participate as part of their day job, and so they're getting paid to be there. So making sure that there is some sort of compensation for families when they're attending and to be considerate about time of day and day of week, you know, maybe an evening meeting would work better for families, but that's not as, that doesn't work as well for professionals because it's, you know, they're on their own time in the evening. So that did come out quite strongly in the survey. Yeah. So this is Molly. So I just want to bring us, I guess, to probably our last question that we're going to talk about today, and that really is this idea of where would you like to see this go? You know, are there any areas in particular that you'd like to see? I guess I'm, if you ask me, I'm really excited to think about this as what comes next. So again, sort of this idea of family engagement as a workforce and this idea of training and where we can bring this past sort of what we've been talking about for the last, ever since I've been involved, really about compensating families and beyond that $25 gift card to show up at a meeting. But really, again, looking at this as a workforce and someone who's really going to be that equal stakeholder to implement change. But I'm curious, maybe, Bailey, where are you thinking that you'd like to see family engagement go as far as supporting it? Yeah. Is so we've Expecting Health as a whole, and the Family Center as a whole has been to so many national meetings, especially in the genetics healthcare delivery system. And I work as the community engagement manager. There's been multiple times that I've invited families or asked some of our families that participate if they're going to join, if they're going to go and they're just not able to, they don't have the funding, they don't have the time. And so seeing some of those different opportunities is at these conferences we hear so much about, that they're there for families and they want families to participate, but how are they supposed to participate if they can't get there? Is if they don't have the funding, they don't have the time, they don't have the childcare. It's just absolutely impossible. So trying to make that more available for families as for starters, would be really helpful. But then two also, not just focusing on one family member is when, like genetics, for instance, happens, it's not just one family member, it's the child when they grow up, it's the siblings, it's grandparents, the parents is involving everyone who's involved in getting everyone's input. Yeah. I loved, again, it brings us back to that idea of investment. Right? So it's that investment in family leaders. So, yeah, that's a great point, Bailey, I think, too, you know, we mentioned that we've sort of a validation for us about what we've known for some time. But there's considerable work that needs to be done in the system to make sure that engagement, family engagement, engaging families in the work upfront is embedded in the system and not considered as an add on. Oh, yeah, we should bring in a family. So I think it just takes specific work to keep hammering that home. That involving families at the beginning in co-production, doing things with families, not for them or to them, is going to be important. And it's not happening overnight as we have seen. But I think we just need to keep on that. Yeah. Well, I just want to thank both of you for being here today for sharing your wisdom, for thinking about these things. I know you guys both work really hard in this field. Ensuring that that family voice is really at the center, especially when everyone is talking about it is for families. And we always talk about, well, no, it's with families. Right? So that's where our work really centers around. So, yeah. So again, thank you for joining me today on linked together. I hope those of you listening kind of join in, see us, listen to our next episodes, and maybe check out that family engagement report that we have on our website that'll be linked in our description of the podcast. So thank you so much. Thank you. Thank you. Thank you for joining us today. What great conversations we had. I hope you check out our other episodes as well as more information at expectinghealth. org. The conversations that we had today is supported by the Health Resources and Services Administration of the US Department of Health and Human Services as a part of the work of the National Genetics Education and Family Support program. The contents are those of the participants and do not necessarily represent the official view of, nor an endorsement by HRSA, HHS, or the US government.