Latest / Becker’s Healthcare -- Pediatric Leadership Podcast / How Blythedale Children's Empowers Parents to Care for Fragile Kids at Home

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How Blythedale Children's Empowers Parents to Care for Fragile Kids at Home · Becker’s Healthcare -- Pediatric Leadership Podcast

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Thanks for listening. Now here's the episode.
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This is Chris Sosa with the Becker's Healthcare Podcast.
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I'm thrilled today to be joined by Joe Wegner, senior Vice President,
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patient Care Services,
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and Chief Nursing Officer at Blythedale Children's Hospital. Jill,
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thank you so much for joining us today.
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Thanks for having me, Chris.
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Jill,
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could you please introduce yourself and tell us a bit about your background?
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Sure. As Chris said, I am Jill Wegner. Uh,
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it's hard to believe that this summer I will have been a pediatric critical care
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nurse for 37 years. My career has been long,
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um, rewarding and certainly given me probably more than I have given to it.
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But my, my real passion and my experiences have always been in the care of,
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um,
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medically complex fragile children from the bedside to
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airland transports, to home care nursing, to, um,
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clinical education, to leadership. Um, and lastly, and finally,
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10 years ago, I found my,
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which I always say is my final home here at Children's Hospital.
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Jill,
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you're with us today to discuss Dale's parent and family education program.
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Could you tell me how that evolved and how it measured success?
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Sure. Um, so as I said, I,
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I have been on both arms of pediatric healthcare at,
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at the hospital setting at the bedside, but I've also,
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my earlier years did some home care cases of some really complex kids,
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and it's a really different environment when you are in a hospital setting and
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you've got a physician next to you or a respiratory therapist or another nurse,
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somebody to consult or say, Hey, what do you think about this? Or say, Hey,
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can you give me a hand? When I was caring for these complex kids in the home,
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it's really just you. Um,
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and I think it just lended itself as,
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as healthcare landscape scape has been changing, um,
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and you constantly hear about in the news about the nursing shortage or the lack
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of access. Um, when I came here as,
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as chief nurse, um,
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one of my main focus was to really make sure that my nursing team
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was professionally and clinically competent at the top of their
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game. Um, but my concern was when I,
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we'd take amazing care, uh, of the kids under our roof,
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but when we transition these really fragile complex kids,
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children and back into their community,
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I wasn't always so confident that the care team I was handing them off to was
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as, um, accessible, as consistent and as competent as,
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um, I felt our families needed them to be.
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So probably about nine years in, um, about nine years ago,
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I made a pitch to our c e o and our board of trustees that we really needed to
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ensure that our parents and our families were really competent,
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but also went home. They couldn't rely on community providers because a,
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um, it wasn't always consistent. We may send them home with 24 hours of nursing,
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but maybe realistically they may get half of that, um,
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available to them in the community and sometimes even less than that.
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So it kind of started a journey with, um,
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with our team really thinking about education is so much more
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than just, let me teach you how to take care of the G-tube, or let me,
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it's more than just let me teach you how to take care of the,
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your child's tracheostomy or their ventilator. Um,
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there's so much more than just the technique. So about nine years ago,
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we launched, we started slowly but truly launching our program. Um,
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started with, uh,
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a vision and a party of one director, uh,
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assistant director of, actually, it started a parent,
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parent education through Angela .
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We started the journey of discovery and exploration and really
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looking under the covers to really see what our families really were up against
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when they went home. What did we need to prepare them for? Um, and as I said,
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the scope is so much more than just the technical aspects of, um,
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of the skills to care for these, these medical needs of their children.
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So we launched it with, um, a curriculum.
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We built a state-of-the-art simulation lab, um,
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that mirrored the, um, exact replica of their bedside.
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So a lot of our first step in,
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in really training and educating our families came in, desensitizing them.
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So getting them in a simulated environment where they could start to practice
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these skills on mannequins,
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start to get the feel of dexterity of equipment away from child's bedside.
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So a neutral environment. It, it mirrors what we're seeing at the bedside,
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but is in a completely simulated environment,
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and it completely opened the doors. It was a game changer for,
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for their learning abilities. We brought them in, you desensitize them,
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you decrease their fears, lessen their anxiety,
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and in the doors to learning open in a very different way. In addition to that,
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um, so they kind of start out in our sim lab in the home, uh,
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the hospital sim lab. And from there we also, um,
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developed a family resource and library room.
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So a place where they can go on their own time, um, can be with our education,
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teamwork can be on their own and they can do some hands-on touch time.
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There's a, a plethora of educational materials and videos that they can watch.
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So at their own speed and in their own time really preparing themselves,
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um, really developing their mass and dexterity of, of working with equipment,
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um, and really enhancing their knowledge.
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And that is such a key pathway to competence as well as
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competence, um, to take care of their, their children.
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We're really empowering them as learners. Um, we, they are adult learners,
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so we, we've adopted a lot of the different,
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not everybody learns one style or one way.
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So we have incorporated that into our, into our curriculum
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and our team works. But one of the other, um,
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things that we learned from our families and a lot of our curriculum,
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a lot of what we developed has come from feedback from families.
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It's us talking with them throughout the process,
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the hospitalization education process, but also after they're discharged.
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So when they go home, our education team went back out.
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Sometimes they did home visits pre and post discharge to figure out
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how do we help you set your home environment? Where do we make Mark?
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And we kept co meeting their feedback and their insight into our curriculum.
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Um, another thing that we developed when we opened our sim lab is we,
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we created a mock home environment.
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So it's great to learn these cares and be able to care for your child in a
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hospital environment where you've got suction easily accessible and everything
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is organized at your hospital bedside.
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But when you go home to a fifth floor walkup apartment in the Bronx, um,
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in a tiny little bedroom, it's completely different.
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So other aspects of the, um,
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education program curriculum was really training our parents how to set
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up their home environment for success.
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So our home simulation lab here in the hospital, um,
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we work that through with them.
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We have purchased equipment and we help them kind of look at
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possible ways that they can organize and set up their nurseries and their at
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home, the ease and the ability for them to,
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to successfully care for their child in the home environment.
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But I think you said, how do we measure it as what,
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what's our measure of success? I don't know that there is any one measure.
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I I, I say if we meet the mark with this family,
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we are constantly challenging ourselves in, in reevaluating,
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did we meet the mark?
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What more can we learn from our parents that we need to do?
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They're really our guides on this journey. Um,
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they're the ones who are really helping us understand what they need to know,
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what they need to master, how did it translate, what we taught them here,
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how did it really translate to reality in the community?
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And then we feed that back in. Um,
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a lot of our program has been focused on not teaching them the task,
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developing a custom patient plan. Every child is different,
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every family is different. Um, every family's learning style is different.
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So there's no cookie cutter education plan.
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What we've really done here is we've really taken the time,
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the energy and the effort to really customize, do an assessment of each family,
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um, and then develop an education plan that works for them. Um, you know,
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covid like everything changed the world,
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but one of the great things that did come out of covid is this virtual world.
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So how can we tap into virtual education sessions?
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So maybe the babysitter or the grandmother can't get in,
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but how can we work with them virtually to help them learn?
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Yes. Uh,
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it all sounds like the program has come extremely long way since it started,
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which is only natural.
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And I'm sure the patients who are in the program are very appreciative of all
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these aspects. Uh, let me transition to this a little bit. Okay.
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So about how many patients does the program assist in a given month or in a
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given year?
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So if I really look back when we, I think the first year we,
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we formally launched our program with just one coordinator of, um,
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the Child and Family Education program.
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We probably served that first year about 200 families.
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In addition, we added two educators.
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So one of the things that we had heard from our families was the every
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nurse of the bedside taught slightly different.
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What only added to their confusion.
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So what we have done with our education team is really formalized a standardized
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way of teaching and a standardized curriculum.
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Not only has the volume of families that we've touched over the past five years,
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almost tripled, but I really, um, I'm confident that the quality,
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the quantity, um,
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and the consistency of the education that we are providing for our families has
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really grown and evolved as well over the past five to six years.
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Oh, that's fantastic. Jill, on that note,
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could you let me know how have any recent advances in technology improved the
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program?
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Um, significantly over the, over the past, you know, nine years,
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as I talked about, one of the, probably our most major advance was our,
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was our state-of-the-art technology. Um, in technology was our simulation lab.
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So not only having, um,
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a simul lab that monitors that models the hospital environment,
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but also now we have a simulation lab that models the home environment as well
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as the home equipment.
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Another barrier our families often face is when we don't have any control of the
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medical equipment that is provided on the community side.
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So you may have used a certain feeding pump, a certain IV pump,
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a certain ventilator at our hospital, but then when we transition home,
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we don't often have control over the equipment you get in the home.
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So what we've also done in our home simulation lab is we take the equipment,
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we've purchased the equipment that they could potentially go home on,
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and we have the opportunity to train them on it here before they're discharged.
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Um, we've launched a digital platform, um,
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where we are doing everything about our program is really about customizing the
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education plan for the child and the family in front of us.
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So we are creating digital videos and digital platforms for our families,
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teaching them training videos that are specific to their child.
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So when they go home, maybe today I this for, for,
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for the first month, I have this set of nurses and then maybe this,
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this my second month home,
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I've got a whole new fleet of home care nurses coming in who don't know my
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child.
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So we give them educational tools that they can use as well for the community
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providers that are coming into the home. Um,
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another huge challenge for our families is medications. So, believe it or not,
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our little, these little children, little complex children go home on a,
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a significant amount of medications. Um, so what we have done, and,
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uh, we've created, we've worked with a, um,
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a company that we have customized a medication record for that
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child. So literally it is an electronic schedule, um,
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for the parents to keep track of when their medications are due,
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what are some of the side effects that they need to look for,
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and all of the information that they need to know about that medication is,
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is there. And that, um, that library, that medication, um,
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program is actually translatable into other languages. Um,
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so it's really been a game changer for helping our parents organize their
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child's medication regime and the safety of medication administration again,
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in the home. Um,
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and then we've invested a lot in our family resource libraries. I say, um,
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adult learners come in all different forms.
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Some like paper and pamphlets and some like electronic devices. So our,
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our family resource room really has captured, um, some of our old hand,
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you know, old school hands-on, uh,
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paper handouts or booklets and pamphlets to read, as well as a collection of,
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um, extensive electronic, um, library that,
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that focuses on kind of the diagnoses,
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that common diagnoses that we're seeing here and some of the, um,
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equipment and things that the kids are going home on.
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Jill, I also understand there are plans to scale the program mm-hmm.
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.
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So what is the scope that Blythedale Children's would be considering,
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and what steps need to be taken to make that successful?
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Okay, so great question and probably, um,
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really our next vision for the next several years is really going to
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be investing in the transition from home to hospital to home.
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And how do we ensure that the community is ready to, to care for,
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for this child beyond our walls? So as we said it,
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the first really starts with the confidence and confidence of our parents. Um,
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but our next phase that we are really, um, diving into is really, um,
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looking at the home care providers.
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So primarily our first focus is gonna be on home care RNs, um,
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and EMTs and paramedics in the community. So remember that parent hits 9 1 1,
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it's the community E M T or paramedic that's kind of the first responder to that
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home. So our respiratory, um,
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assistant director of respiratory is in, in combination with our, um,
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child and family education coordinator coming up with a curriculum.
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And we're designing a plan.
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We can get community EMTs and paramedics here on site,
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put them through our sim lab, through the use of our sim lab, um,
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enhancing their, their skills.
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So when they're called to the community to take care of these, um,
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to tend to these medically complex children in the community, they've got some,
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we're really enhancing their knowledge base.
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And the second is the home care RNs. As you know,
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the nursing predominantly the home care population is really
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adults. Pediatrics are a very small pool of that.
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So on top of home care agency struggling to have a,
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uh, uh, the volume of nurses,
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it's even harder to really have that volume of nurses that have the clinical
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skillset and capabilities and competencies to take care of these medically
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fragile children.
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So developing a curriculum where ideally we can get them in here and trained in
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our sim lab, and then ideally get them to the bedside.
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So they're actually partnering with our nurses to take care,
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learn how to take care of that child before they meet them in the home for the
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first time. So one of the great, um,
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another great talk about doors opening. Um, uh, uh,
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one of the directors of nursing and myself, um,
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had the opportunity to apply for a,
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a nurse innovation fellowship that is sponsored by the University of
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Pennsylvania, Johnson and Johnson and the Wharton School of Business. Um,
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and it was a national application and we were selected. There is, um,
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10 cohorts from across the nation,
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and we were one of the hospitals that were selected to participate.
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So for the next year, we're working with a really, um,
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high level team through this fellowship.
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And our focus is going to be exactly this trans the,
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the successful transition of a home of a child from the hospital to home.
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What challenges are we facing and how do we,
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how do we really focus on the community piece and, um,
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bring that up to the competence level that is needed. Um,
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so that's another great avenue that,
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that we're gonna be partnering with to kind of help us figure this,
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this solution as design the solution, um, for a problem that is,
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is not only, um, in our immediate area, but across the New York state,
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and it's a national problem.
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This ability to care for these medically fragile children in the community is
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just not something that's unique to Dale. It really is a national problem.
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Um, and we really,
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all we wanna do is establish ourselves as the center of excellence.
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And we just wanna write the roadmap that then we would love to share with
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children's hospitals across the nation. Um,
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this isn't proprietary to blythedale,
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we're really doing this immediately for our kids,
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but really I want to be able to craft that roadmap that anybody can
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pick up and say, the, this is what we've learned here, just roll this forward.
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Um, I think after we,
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once we move beyond the RNs and the EMTs and paramedics, you know,
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it's like an onion. Um,
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you get into these rural communities and there may be one community pharmacy,
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um, pediatric medication,
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and the compounding of these medications for our children are very complex.
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So there's also a whole pharmacy education level of how do we,
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when we're transitioning these children to the community,
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how does our pharmacist partner with the community pharmacist to make sure that
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they are competent and able to, um,
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they have the skillset and the knowledge to prepare the medications that the
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child needs. And then you've also got the pediatrician piece.
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So sometimes in these rural communities, there may be one,
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one family pediatrician, maybe,
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maybe a handful that maybe have never even taken care of a child with a
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tracheostomy or a central line or a ventilator. So there's also that whole, um,
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really looking at the entire
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health community that we are transitioning over the care of these children
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to, and how do we enhance that? How do we do that,
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that handoff more efficiently and effectively in making sure that we're handing
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them off to competent caregivers?
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Jill, thank you so much for sharing your insights today.
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We definitely cannot wait to share them with our audience,
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and I look forward to connecting with you soon.
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Oh, Chris, thank you so much. A lot of fun.
19:32
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