Sim Sessions With Samreen: Caregivers of Kids with Hypoplastic Left Heart Syndrome

January 28, 2022

How can we best partner with patients and families to make sure they are comfortable taking their kids home from the hospital, particularly after a long or complicated stay? Simulation may be the answer. On this Simulation Sessions with Dr. Samreen Vora, listen as she interviews two of our Kid Experts at Children’s Minnesota about the innovative curriculum they developed using simulation to support families going home with children with congenital cardiac problems. Follow along on this journey highlighting examples of success to think about how you might adapt similar models for your practice with patients and families with complex medical needs.


Dr. Angela Kade Goepferd: This is Talking Pediatrics, a clinical podcast by Children’s Minnesota, where the complex is our every day. Each week we bring you intriguing stories and relevant pediatric healthcare information, as we partner with you in the care of your patients. Our guests, data, ideas, and practical tips will surprise, challenge, and perhaps change how you care for the most amazing people on Earth, kids.

Welcome to Talking Pediatrics. I’m your host, Dr. Angela Kade Goepferd. How can we best partner with patients and families to make sure that they are comfortable taking their kids home from the hospital, particularly after a long or complicated stay. Simulation just may be the answer. On this, Simulation Sessions with Dr. Samreen Vora, listen, as she interviews two of our kid experts at children’s Minnesota, about the innovative curriculum they developed using simulation to support families going home with children, with congenital cardiac problems. Follow along on this journey that highlights examples of success to think about how you might adapt similar models for your practice with patients and families with complex medical needs.

Dr. Samreen Vora: Hello, and welcome to Sim Sessions with Samreen. In this episode, we discuss using simulation to truly be every family’s essential partner as they navigate their care journey through Children’s Minnesota.

Over the last three years, the simulation team has partnered with nursing educators and other providers to harness the power in an innovative way to give families the opportunity to practice all aspects of caring for their children in a simulated setting before being expected to do it on their own. Joining me today is Brittany Dahlen, an educator and nursing professional development specialist for simulation at Children’s Minnesota and Jocelyn Berbee, a cardiology pediatric nurse practitioner at Children’s Minnesota.

Brittany is an educator and nursing professional specialists for simulation. Her work with the simulation department includes designing and implementing curricula to meet organizational needs, including utilizing simulation to target preventable harm reduction. Over the last three years, Brittany had led the team to secure grant funding from the Children’s Hospital Association to develop the complex cardiac caregiver simulation curriculum, and now has received grant support for the third year in a row.

Welcome Brittany.

Brittany Dahlen: Thank you.

Dr. Samreen Vora: And Jocelyn Berbee is a cardiology pediatric nurse practitioner at Children’s and she’s been here for more than 13 years, providing care to inpatients in the CVICU with a special focus on children with single ventricle heart disease. She worked with Brittany to create a process for the simulation program so it could be a part of the process for all families that were going home with a child who has a single ventricle heart disease. Welcome Jocelyn.

Jocelyn Berbee: Thank you for having me.

Dr. Samreen Vora: I wanted to start with Brittany and hearing a little bit about the general idea of using simulation for patients and caregivers. I know that there’s a number of articles and studies in the simulation world that have been published on this topic. Can you tell us a little bit about that?

Brittany Dahlen: There’s been a lot of work, over the last decade or two, on how to better support families going home caring for children with complex medical needs, specifically with tracheostomy and ventilator use in the home setting, as obviously these come with a lot of high risk and emergent needs that families need to learn. And then some programs have designed central line maintenance programs. To our knowledge there isn’t a program that exists currently for families going home with an infant with single ventricle physiology. And they have a lot of high risk cares that they need to do in order to safely care for their child in between their surgical palliations. It’s a growing field and one that we’re excited to be a part of.

Dr. Samreen Vora: We’ve done simulations for caregivers and parents. Can you share what our journey here at Children’s Minnesota has been around using simulation for caregivers?

Brittany Dahlen: We were already providing some hands on experience at the bedside. Nursing staff and nurse practitioners would often provide families with that opportunity for some hands on practice at the bedside. But families in the cardiac unit, they actually asked for more hands on practice and nurses also requested this opportunity for families to get away from the bedside and be able to focus more when they’re not caring for their child at the same time. That was the impetus for us to start designing this particular curriculum. In addition, we also had requests for feeding tube programs. We’ve also, simultaneously, had some caregiver simulations offered around helping families manage a new feeding tube, which families have reported is very beneficial as it can sometimes feel overwhelming. You’re going home with a new device. How do I manage that when I’ve never managed anything like it before?

Dr. Samreen Vora: I think we started some of the caregiver simulations here at Children’s by doing a small program that started with that helped to build to this cardiac sim program. Is that correct?

Brittany Dahlen: Yes. Our hope is that we continue to grow both of these programs, because what we’ve found is that there’s more and more families that can benefit from both of these areas. And we get requests, somewhat endlessly, for expansion.

Dr. Samreen Vora: I wonder, I know what Children’s we’ve talked about we had very robust education at the bedside for the caregivers of patients with single ventricles, and they even participate in a rooming in before they go home. This simulation program didn’t necessarily take any of that away, but rather added another level of scaffolding. Jocelyn, can you share how this program was built to compliment what was already available to our families?

Jocelyn Berbee: This has provided families with the ability to enhance what they’re working on at the bedside, but also is able to give them the confidence of recognizing that it’s not a test. It’s not a quiz, but they can perform and do these things. They remember more, than maybe they think they do, when they have the opportunity to practice when prompted with some different questions, or asking them to show a provider how to do something. And it’s not, as Brittany said, with the pressure of being in the room, trying to focus on your child, there are people coming and going, there are so many distractors that I think it’s easy to question how much you’ve actually retained. When they go home, it feels really intimidating. And there’s that feeling of, “Can I really do this when I leave the building?” Getting to work with our educators in the sim lab shows them they have these skills. And if there are things that they identify, that they would like more practice with that we have the time to do that, they have the opportunity to do that before they ever leave.

Dr. Samreen Vora: I know you did some measurements of that before and after these simulations. Can you speak to any of those outcomes as well?

Brittany Dahlen: We wanted to, very intentionally, measure several things when we started this program, especially with the generous grant funding from CHA. We measure comfort level. So self reported comfort level of each participant and their performance. We have an assessment tool that we use just to ensure that they leave the simulation space with a clear understanding of all of the cares that they’re going to need to do at home. As Jocelyn said, this also helps us identify areas where they might need more practice, whether it be at the bedside or coming back to a simulation session which we’ve offered, if needed.

Brittany Dahlen: In addition, we did a measure around anxiety. There’s a State Trait Anxiety index. We use the short form version so that it’s not as many questions for our caregivers, but it allows us to understand what’s the level of anxiety these families are experiencing. We do that before the simulation and after, and we saw a 22% decrease in anxiety following the simulation.

Dr. Samreen Vora: Wow.

Brittany Dahlen: Yeah. We were really excited because, as Jocelyn mentioned, sometimes they can feel like, “I’ve got to perform. Otherwise, I can’t go home with my baby,” and that’s terrifying. But then they get in the sim space and they really feel like, “Oh, I know this.” Sometimes they’re even saying things before the instructor can get to the next thing. They’re like, “Oh yeah. And then if this happened I would do this.” And so it’s really impressive. They put all the pieces together.

Dr. Samreen Vora: What an impact this hands on simulation is doing. And also reestablishing that what’s being taught at the bedside is sticking. It was more about let’s put it together and decrease that anxiety so that when I get home, I’m not having palpitations as I have to do something on my kid. Thinking about this simulation program, it’s a lot of work. Thinking about those measures that you did, bringing each of these families and doing a hands on session, you’ve been really instrumental in making this program sustainable within a unit that’s very busy, staff that’s stretched. Can you talk a little bit, Jocelyn, about how you’ve done that and how you and Brittany have partnered to do that and others as well?

Jocelyn Berbee: We are very lucky, in the CV, to have a really strong multidisciplinary team to help families and these babies go home and be successful. Specifically for children that have shunt-dependent physiology, some of which are single ventricle, some will eventually be two ventricle palliation. We started a home monitoring program at the end of 2010 with the idea that, because these children are quite fragile during this time, that we call the inter stage from the time of their first surgery until the time of their second surgery, which will be sometime four to 18 months in the future. We wanted to be able to have an adjunct of how can they practice some of the different skills that they’re being asked to do at home. The things that we’ve been having them do, since you 2010 … I think to date, there’s been almost 250 patients actually that have gone home with our home monitoring program, which is kind of amazing.

Jocelyn Berbee: We provide them with a baby scale and a pulse oximeter so that they’re able to monitor weight gain and saturations. We know that both of those things are associated with better long term outcomes. And if we can identify, find an issue early, in between clinic visits, we are potentially preventing any sort of morbidity that could happen during that inter stage period. We’re also asking families, as you’ve mentioned, to manage a lot of medications, some of which are injections, some of which can be IV, feeding tubes, all of those different details. And they have really great instruction from many people at the bedside. We’ve asked them to do rooming in, or basically stay in the room for up to 24 hours and pretend, so simulate at the bedside, like they’re at home. They’re supposed to be in charge of all of their child’s cares during that time with staff available if they were to think of any questions or need some help trouble shooting things.

Jocelyn Berbee: I think the benefit of having a simulation prior to them rooming in has provided them with an opportunity to already practice. It’s not practicing on their child, as you’ve mentioned, that nobody wants to do that. Nor should they ever do that. But now they can feel that added confidence of I’m taking care of my child. And I already know that I’m doing these things correctly. I have this skillset. I know that I can make this happen at home. And for things, certainly like injections and other things that no one wants to do for their child ever, I think that that is a very empowering and I think some of that confidence actually leads to some of those cares and that transition home being smoother for all of them involved.

Dr. Samreen Vora: I’m curious, also I know those simulations, each of those simulations on their own also have a checklist associated with them. Can you talk a little bit about that piece of it?

Jocelyn Berbee: We were able to have a number of different people weigh in on the important aspects of what would need to be on that checklist, parents included, as far as important details that they would need to show that they have mastery of before we would say, “You’re ready to go home.” There are a number of different things on their. Medications, as you mentioned, feeding tube. If there’s injections. Talking about those reasons to call for help or for cardiology, if they have questions. We call those red flags, outlining all of those things. And Brittany has designed some nice scenarios where you can actually give an example. Let’s say, you’re looking at your pulse oximeter and you see these numbers, is this concern? You look at your child and you see, they appear to be breathing differently. Is this a concern? I think all of those different examples also helps some of the critical thinking process in knowing when to reach out for help, when to call. And that has also been helpful.

Jocelyn Berbee: We have been able to expand on having a online base for them to be able to enter some of this data as well. And so within our sim teaching, that’s all new this year, they’ve been able to incorporate having families practice how to get onto that and make sure that they’re comfortable inputting data. Which, when you’re throwing another piece of technology at a family, I don’t know about you, but I would like an opportunity to practice before having to go home and manage that piece as well. And so I think just overall, in terms of having the ability to practice all of these things, we have much less phone calls or questions from families once they’re home about, “Now what are we supposed to look for? What are we supposed to do? I’m not sure how to utilize this.” That used to be quite frequent because they’re getting such a large input of information. Even if you start discharge teaching early in the hospitalization, it’s just overwhelming.

Being able to break it down this way, I think has made a huge difference. We just aren’t getting those same kind of day to day questions. We’re getting a lot more high level, well thought-out questions that are quite impressive, honestly. These are parents of fragile children, but in some ways you feel like you’re talking with your colleagues at the hospital. It’s amazing.

Dr. Samreen Vora: But I also know you’ve done simulations with a number of families now. And I wonder if you could share what kind of feedback you’ve received from families?

Brittany Dahlen: Sure. Well, in real time, families will often share, “I was kind of nervous to come to this, but now that I’ve done it,” even right away at the end, they’re like, “Now I just feel like wow,. I’ve got this.” It’s really cool to see their confidence grow right in front of you, especially when caregivers aren’t able to be at the bedside very often because they’re either work frequently or they’re from far away. They sort of feel like they haven’t had the opportunity to do a lot of that hands on practice at the bedside. I think that it also is an equalizer. It helps provide that opportunity to families that may not have gotten it earlier. It is really exciting.

And Jocelyn, I know you’ve had conversations with families after the fact. Maybe you could share some of your follow visits.

Jocelyn Berbee: Yeah. We have families that will come back from their sim class to the room, looking like they’re breathing sigh of relief. We’ll do a care conference before kids go home. It’s typically either the day before or the day of discharge and families will comment on how helpful that sim class was, even if they felt like they were going into that knowing most of the things, that just having the ability to practice in a safe setting where that’s what they can focus on really was empowering.

I know word of mouth is a very strong thing. Many families that have children with complex health needs will find each other and find ways to communicate, especially in a digital age. We have families that don’t have shunt-dependent physiology that are saying, “I heard about this sim class. I would really love to be able to do that.” Which I love to hear. And it also, I think really it’s a fire in Brittany and I and the rest of our team to want to be able to expand upon this and provide it to families that have other types of, not only congenital heart disease, but other just health issues. It’s inspiring.

Brittany Dahlen: It is.

Jocelyn Berbee: Yeah.

Brittany Dahlen: It is.

Dr. Samreen Vora: Has there been any newer iterations or things you’ve added or changed based on that feedback you’ve gotten?

Brittany Dahlen: Well, we’ve added much more depth in the feeding tube section. When we initially started, we had really only had resources for one type of feeding tube, which wasn’t super common for our families going home in the home monitoring program. We’ve since expanded so that we can really individualize it. If a kiddo has one type of feeding tube, the family really sees that feeding tube and gets hands on practice with a mannequin or a doll so that they really feel comfortable before they go home managing that device. That’s been really great because now we have more robust feeding tube section.

We also have expanded the medications content. We’ve included injections so that families who are going home managing like a subcutaneous injection, like Lovenox, for example, they get practice on a task trainer, on a mannequin, giving that injection. And how do I hold the baby so that they’re safely not going to move when I’m trying to give this shot? Even just letting them process the fear around giving an injection to their kid and let them talk about it, because they are in a place where they’re not in front of their baby or having to worry about somebody walking into the baby’s room. They can just kind of let it out. Sometimes becomes a open space for them to talk about how they’re doing in general too.

Dr. Samreen Vora: My understanding is you’ve also added … With the requests for people wanting to do more simulation, there was also a request to create some videos around the things you’re teaching. Can you talk a little bit about those videos and that process?

Jocelyn Berbee: That’s been a wonderful addition. We’ve had videos that we created about what to look for as far as a sternal wound or activity restrictions, for a number of years, but that doesn’t provide the families with the ability to look back at some of the other nuances that Brittany has already spoken of, such as how to properly administer a medication, or if you are troubleshooting an issue with a G tube at home. That has enabled us to expand upon what we have in our video library so that families can look at these things, not only during the sim class and while they’re inpatient, but while they’re at home if they need a reliable refresher with correct information about how to do those things.

Dr. Samreen Vora: Correct, as well as tailored, right?

Jocelyn Berbee: Yes.

Dr. Samreen Vora: And so it’s tailored to what they were taught here and how they’re going to do it at home and for their child. I think having those videos of doing things correctly is really important. Really cool to hear kind of what we’ve been able to accomplish, what you’ve been able to accomplish over the last three years. I’m curious to hear with all the requests you guys are talking about and people just … It’s been very well received. Where do you see this type of simulation for caregivers potentially being most useful or helpful in the future? Where do you see it going in the future?

Brittany Dahlen: I have gotten a lot of requests from our NICU department.

Dr. Samreen Vora: Yes.

Brittany Dahlen: Thinking of all of the cares that those families are going home when they have a premature baby, often that comes with maybe some medical devices that you’re dealing with for a time or medications that your child may be on. I think that that would be a great place for us to expand. There’s a lot that families have to learn when their child gets diagnosed with diabetes and so thinking about some of that hands on teaching we could do, scenarios we could have for families. Like you just had this meal, how are you going to do your insulin dose after that meal? I think that there’s a lot of endless opportunities, but those are just a couple.

Dr. Samreen Vora: Thank you for sharing that. Is there anything else either of you would like to add …

Jocelyn Berbee: Within the cardiac world, I would love to expand this to be able to include other children with diagnoses outside of shunted or single ventricle physiology. We have some very, very complex children and parents managing things at home that are very difficult. And Brittany has mentioned that some families are not able to be at the bedside, often due to their circumstances, whether it’s work or children outside of the hospital. I think that it would be a huge benefit to those families to have access to services like this.

Because of the growth of this program. There is not enough hours in the day for Brittany to be able to meet all of the needs of even just the cardiac patients. We’ve had the opportunity to have three nurses from the cardiac unit that have always really had a strong passion for that education and meeting the family where they are, being able to identify ways to really effectively make sure that they really are comfortable and they really do know what they’re doing before they go home, that applied and have now become a part of the sim teaching. That has been wonderful, not only in the sim lab, but that they’re able to then come back to the CV unit and provide more of that background, more of that information to their other nursing colleagues so that we can continue to improve the amount of education and the quality of education that we’re providing at the bedside.

I think it’s remarkable how much information from the time of diagnosis, which often is fetally, to the time that their child is recovering from their first surgery, how much information families are provided, whether it’s online or handouts or verbal conversations. I think, being able to sum a lot of those things up by allowing them to actually have something tangible to practice and implement and do and know what to look for, I think that’s more powerful than a lot of the handouts or things that we can provide somebody. Just that confidence is it’s a game changer for a lot of families and I just can’t thank Brittany enough for all of the work she’s done, both on the front side and the back side of this because it’s really, really improved the care for these families and I think someday will be the standard of care for most of our children that we get to see that have any complexities such as these.

Dr. Samreen Vora: Well, thank you both for sharing your experiences. I really look forward to caregiver simulation growing at Children’s Minnesota to truly partner with all of our families on their care journeys. In 2003, Ziv et al., published a paper stating that patients are to be protected whenever possible and they are not commodities to be used as conveniences and training so simulation based education is an ethical imperative. Based on our conversation today, I would say, as we move forward, we may even say simulation based training for caregivers is an ethical imperative.

Dr. Angela Kade Goepferd: Thank you for joining us for Talking Pediatrics. Come back each week for a new episode with our caregivers and experts in pediatric health. Our executive producer and showrunner is Ilze Vogel. Episodes are engineered, produced, and edited by Jake Beaver. Lexi Dingman is our marketing representative. For more information and additional episodes, visit us at, and to rate and review our show, please go to