Transitioning Your Teenager to Young Adulthood – PediaCast 402

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  • This week we consider the transition of teenagers to young adulthood. It’s important to start early and gradually encourage participation, critical thinking and responsibility. Clinical social workers, Michele Buck and Rebecca Furru, visit the studio to provide helpful hints on moving our children toward independence and autonomy. We hope you can join us!

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  • Transitioning Teenagers to Young Adulthood

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Announcer 1: This is PediaCast.

[Music]

Announcer 2: Welcome to PediaCast, a pediatric podcast for parents. And now, direct from the campus of Nationwide Children's, here is your host, Dr. Mike.

Dr. Mike Patrick: Hello everyone, and welcome once again to PediaCast. It is a pediatric podcast for moms and dads. This is Dr. Mike, coming to you from the campus of Nationwide Children's Hospital. We're in Columbus, Ohio.

It's Episode 402 for April 26th, 2018. We're calling this one Transitioning Your Teenager to Young Adulthood, an important topic. I want to welcome everyone to the program. 

This one would be a particular interest to the parents in the crowd with kids in middle school and high school, as we consider transitioning those children from the teenage years to young adulthood. 

0:01:10

Now, if you have younger kids, keep in mind babies and toddlers and pre-schoolers, they become school-aged kids. And before you know it, they're in middle school and high school. Trust me, the time flies. 

And it's always good to be prepared especially if your young child has a chronic illness or complex disease. Things like cerebral palsy, significant developmental delay, extreme prematurity, congenital heart disease, sickle cell anemia, cystic fibrosis, spina bifida, diabetes, asthma. Really, the list goes on and on.

For these kids, it's really important to start young providing age appropriate information about their condition and its management. Slowly let them take on some autonomy and to answer their questions as you go along truthfully, even when those conversations become difficult, when you're not sure of prognosis. Or management is complex and difficult and they're not like other kids. This can be a difficult thing.

0:02:13

So, while we're focusing on sort of the middle school and high school years, we'll also talk about beginning the transition process early for younger kids, especially those who require more support and care along the way.

Also, for those of you with the young kids at home, this episode maybe a worthwhile listen. Not only as you think about years ahead, but also think about families you could support by having this information on hand. Maybe, you don't have kids over the age of ten, but you know someone who does. And maybe you could help support them through the process and share this resource with them. Always a good idea to help one another in the important role of parenthood. 

And just because someone has older kids, they've been a parent longer, they have more experience, it doesn't mean they automatically know all these stuff. My kids are 23 and 21 at this point. And as I researched this topic of transition, I came across new concepts which would have been a great help a few years ago. 

[Laughter]

0:03:16

Dr. Mike Patrick: That's the way it goes sometimes, right? Seriously, we're always learning and growing and it's great when we can help each other in the process. 

Speaking of help, I have a couple of terrific studio guests joining me as we consider transitioning teenagers to young adulthood. They're both clinical social workers here at Nationwide Children's Hospital. We'll get them settled into the studio in a moment.

First though, I want to share some fun facts that I think you might appreciate. There's a new show on television. And by the way, next week is Screen-Free Week. So, if you haven't heard of this, we're going to talk about it more next week, but you can go to ScreenFree.org and learn all about it. 

So, next week is the week to turn the TVs off. And again, on next week's show, we'll talk about in a little bit more depth. But for a sneak peek, go to ScreenFree.org and learn all about that.

0:04:13

But we're going to talk about TV here for just a moment because that's what our fun facts revolve around. So there's a new show that's started on ABC this year. It follows Roseanne on Tuesday nights at 8:30 PM here in the Eastern Time Zone. It's called Alex, Inc. and it stars Zach Braff who is also directing many of the episodes. 
Now, Zach Braff, you may remember, starred in the sitcom Scrubs back in the early 2000s. He played the young resident doctor by the name of JD in his residency training. And I don't usually like medical shows that much. 

First, because they are not usually accurate which annoys me, so I pick everything apart. And second, because it's a little too much like going to work. However, I always enjoyed Scrubs because it was very funny. And it was actually more like real life in the medical world than the plethora of medical dramas that you can find on the networks and in Hulu. 

0:05:11

So, when I saw that Zach Braff was working on a new television show, it piqued my interest. And then, when I heard the premise of the plot of Alex, Inc., which is a family guy with a wife and two school-aged children at home, quitting his job as a radio journalist and starting his own podcast company, well, you know, as doctor turned podcaster myself, I had to give it a try.

Now, and this is the first question my wife would ask me. You do realize that Zach Braff is neither a doctor nor a podcaster in real life? But that's beside the point.

So, I've been watching Alex, Inc. and enjoying it so far. And here's where the fun facts I mentioned come into play. In the show, he is recording his podcast with a Heil PR-40 microphone. And I know this because if you pause the show and look at the microphone closely, which I hesitate to admit doing but I did, you'll notice that the brand and model of the microphone, they're blurred out. They don't want to provide free advertising like I'm doing here. 

0:06:14

But it's blurred out in the exact location and in the exact shape of the make and model number printed on that particular microphone. And I know this because I know that microphone very well. In fact, I'm speaking into one right now. You're hearing me through it. And I have three others here in the studio, three others of those microphones for my guests to use.

It turns out the Heil PR-40 is particularly popular among podcasters, which tells me the show is research pretty well. So, that's fun fact number one. We use the same microphone.

Fun fact number two is that his microphone is connected to a digital recorder made by Marantz. It's called a PMD661, and I also have one of those right here in front of me in the studio. It's not my primary recording device for that. I used my trusty iMac and Audio Hijack software from a company called Rogue Amoeba, that's fun. 

0:07:10

But I do use the Marantz as a backup. It's connected to my Mackie Onyx 1220i mixer board. And it provides an additional recording stream, sort of a failsafe in case anything goes wrong unexpectedly with the computer or software in the studio.

Of course, our setup is much more advanced than one portrayed in Alex, Inc. We also used pop filters and channels strips and a telephone hybrid to connect with remote guests. But fun fact number is that we are both using a Marantz PMD661 as an audio recording device. 

And then, there's fun fact number three. We also use the same head phones, Sony studio headphones, model MDR7506, also very popular with podcasters, which again speaks to how well the television show Alex, Inc. is researched. 

In my opinion, the writing and the acting, they've been good as well. And it also doesn't hurt that the show follows Roseanne, right? I mean that's sure to boost your numbers for a little while. 

0:08:08

But at the end of the day, it's fun as a podcaster watching the show about podcasting, generally more enjoyable for me than watching a medical drama. Better yet, I know, turn the TV off, do something active and productive. 

And next week for sure, maybe engage with the family instead of sitting in front of the screen. But the truth is I don't always practice what I preach. I try but best intentions don't always work out. But next week, we're going to try Screen-Free Week next week. Go to ScreenFree.org to learn more.

Okay, enough on television shows and screen time. Let's get to our topic at hand, transitioning teenagers to young adulthood. 

Real quick before we introduce our guests, I do want to remind you that if there's a topic that you would like us to talk about, if you have a question for me, you want to direct me and you want to point me in the direction, that's what I'm trying to say of a news article, or journal article, please do. It's easy to get in touch, just head over to PediaCast.org, look for the Contact Link.

0:09:08

Also, I want to remind you, the information presented in every episode of PediaCast is for general, educational purposes only. We do not diagnose medical conditions or formulate treatment plans for specific individuals. If you do have a concern about your child's health, be sure to call your doctor and arrange a face-to-face interview and hands-on physical examination. 

Also, your use of this audio program is subject to the PediaCast Terms of Use Agreement, which you can find at PediaCast.org. 

All right, let's take a quick break. We'll get our guests settled into the studio and then we will be back to talk about transitions. It's coming up right after this.
  
[Music]

0:10:13

Dr. Mike Patrick: Welcome back to the program. We have two studio guests joining me as we consider the very important task of transitioning our teenagers to young adults. Michele Buck and Rebecca Furru are both clinical social workers at Nationwide Children's Hospital with a particular interest in helping families with this transition. Let's give them both a warm PediaCast welcome. Thanks so much for being here today.

Michele Buck/Rebecca Furru: Thank you for having us.

[Laughter]

Dr. Mike Patrick: And in unison. 

[Laughter]

Dr. Mike Patrick: Really, really appreciate you guys stopping by. 

Michele, let's start with you. Just what do we mean exactly by the term transition as we think about teenagers?

Michele Buck So transition is the term that we use to talk about bringing children from childhood into adulthood and how we support you as medical professions in that transition.

Dr. Mike Patrick: And this is more than just transferring their care from one provider to another, correct?

0:11:05

Michele Buck Correct. So, transition to adulthood is the larger journey where we're teaching kids how to do adult things, how to schedule appointments and manage their own medicines. And transfer of care is when one doctor ends their care for you and refers you to another doctor to begin their adult care.

Dr. Mike Patrick: When we think about when folks become adults, sort of legally and by tradition, we think of 18 years of age. Is this something that should be a goal of a parent, to transition their teenager to young adult by age 18? Or is there more flexibility than that?

Michele Buck Age 18 is a really good goal. I mean, it is the legal cutoff, so you're going to have some things that change at age 18. But it is definitely a process, and it should start well before age 18 where you start introducing your child to some of these adult tasks. And at age 18, that's like the legal cutoff, but you're still going to be there as a support as long as they need you.

0:12:07

Rebecca Furru: I think you definitely have flexibility depending on your child. I mean, you always know them best but also their particular diagnosis and their life with you. Everyone has different barriers and obstacles. I mean, we don't all come from the same walk of life and so that has to be taken into account as well.

Dr. Mike Patrick: Yeah, I think about my own kids in this process, and they're 21 and 23 right now. And it's hard letting go of being the parent both from my point of view but also from their point of view. And it seems even though there's that legal definition of 18 in today's very complicated world, which is way more complicated than it was when I was 18, it still just feels right not controlling, but still being there for each other in support. Just as they'll need to do for their kids years from now. I can imagine how complicated things would be then, right?

Michele Buck Yeah, exactly. And we recommend that parents act as partners in this journey. So, you're going to need to be there to support your child and then work with the medical team, too.

0:13:06

Dr. Mike Patrick: This is an important thing, this idea of transition. Sort of explain to us. And I think people get that the idea of why it's important, but just kind of put that into words for us.

Michele Buck So, it's important because you want to teach your child how to be an effective adult and to manage their own healthcare. And that's really what transition is all about.

Dr. Mike Patrick: Yeah, because you can't always be there for them. They have to start making decisions on their own, not just with related to healthcare, but really all aspects of their life. And so, getting them to the point where they can start making good decisions and being responsible, thinking things through, critical thinking skills, all that is something that you have to nurture. 

When you talk about starting that early, Rebecca, when is a good time to start?

Rebecca Furru: So, research really recommends that you start the process anywhere between 12 and 14 years of age. And again, that really depends on your child's diagnosis, knowing your child's certain capabilities, if there's any potential barriers. But really, I do feel strongly that is a good age to start that process.

0:14:08

Dr. Mike Patrick: So right around the time that they're becoming a teenager. So 12 to 14 and again just depending on the maturity of your child and sort of what circumstances that you have. I would imagine that folks with chronic and more complex diseases maybe would even start that to some degree earlier, as they're managing their disease. Especially if they're on medications, they're taking insulin, they're doing inhalers, then you would start having those discussions even at a younger age.

Rebecca Furru: A really great place to start, especially for 12 to 14 and maybe even a little bit younger, depending on the complexity of the diagnosis, is just understanding what is your diagnosis and what's your current treatment. And of course, we all understand in the medical field and hopefully we do a good job of explaining that to parents is that treatment can change overtime. But what is it right now when and how are you explaining that in a way that your child can understand? 

Dr. Mike Patrick: Totally make sense. Kind of march us through, I look at this as I was thinking about transitions and we're talking about it within the context of pediatric medical care. So, there's the medical components of the transition as you think about making decisions for health and wellness in any diseases that you may have. 

0:15:17

But then, there's also that critical thinking, independent thinking which then sort of goes beyond just the medical world and making financial decisions and educational decisions, job decisions. Really, you can bring those same skill set of thinking critically to all aspects of life. 

So, kind us march us through what are the important components of the successful transition as we think about the health and wellness and medical stuff?

Rebecca Furru: Sure. As we specifically think about in the medical field a successful transition, starting between that 12 and 14, there's really about six core elements that we really want to kind of get to the root of a transition.

Dr. Mike Patrick: Sure.

Rebecca Furru: And the first one is really just a good policy. We really want to make sure that we're communicating to families and to our teens what to expect. 

0:16:09

Setting expectations and having good communication is going to be the root of really that partnership, as Michele spoke about earlier. And just making sure that we are communicating throughout the entirety of that time period, that journey.

Dr. Mike Patrick: And just kind of managing expectations then in terms of what the parent's role is, what the patient's role is in this. So that they can sort of start with an understanding of how to do it and where to go.

Rebecca Furru: The next couple of steps I'm just kind of kind of bundle together for basic understanding, and that's really going to be education and assessing of your skills. So, that's going to be things like medication management, understanding your treatment plan, understanding your diagnosis, how that kind of can affect your normal life, your everyday living activities. 

And then, with that component, you're going to be regularly assessing that skill. Are they ready for transition or that other world to transfer? Are we actually giving you those skills over time? So, assessing at normal regular intervals.

0:17:14

Dr. Mike Patrick: One thing as I think about my own medical practice, the importance of folks understanding sort of in terms that they can understand but without dumbing down the science what's going on with any medical conditions that they may have. You know, the pathophysiology, we would say in a medical world but really just understanding what's happening in their body that is making them have an illness.

And I think sometimes as we see lots of patients quickly, just we don't have enough providers. And that's the first thing that really sort of gets left behind because we want to just tell folks, okay, here's what you have. Here's what you need to do, without explaining the underlying why. 

But I think part of this transition is as you said, understanding the medical conditions and what the treatment plan is. But the more of the underlying science of it that they can understand, I think that just makes everyone's job easier. And that has to start with the provider explaining or the parent saying, Explain to me what is happening in my body that makes me need this medicine. And how does the medicine help that process? And just really getting a firm grasp. 

0:18:21

We call that health literacy. But I think it's an important thing. And the providers out there listening, even though it's a crazy day, you're very busy seeing patients, take that time to really explain to folks.

Michele Buck And I think that's really important for us as pediatric providers to do because we need to recognize that the pediatric healthcare system and adult healthcare system are very different. And while we may just expect that these families are understanding what we're telling them and they're going to go on to adult healthcare system and be just fine, that's usually not how it works. So we need to help them prepare to be in a completely different system when they get over there.

Dr. Mike Patrick: Yeah, yeah, absolutely.

Rebecca Furru: So as Michele said, two completely different systems. We're very family-centered here in pediatric care. And when they transition over to adult care, it's very patient-centered care. And so really, that's the goal, making sure the patient can understand and communicate their care needs so that they get the care that they really need from that new provider.

0:19:18

Dr. Mike Patrick: And there's lot of little pieces parts too that go beyond the science. Just things like managing medical appointments, for instance. So, when you transition from the pediatric world where mom and dad make the appointments for you, in the adult world, you have to call and make your own appointments. How do you start that process of turning to autonomy in terms of medical appointments?

Rebecca Furru: I think here at Children's, actually, we make it pretty easy. A lot of us are asking right as they're walking out of the clinic when do you need to follow up? Can we make your appointment today? 

And that's a really great place to start, is instead of having mom or dad or caregiver actually initiate that with the registration staff or the nurse who's asking, allowing the patient, the teenager to take the lead on that. Encourage them. Everybody loves their cellphone, right? Tell them to pull out their cellphone and look at the calendar. 

0:20:12

And then you have mom, dad or caregiver standing right next to you. And you partner together with the medical staff and then you allow the teenager to have the autonomy to start setting up their appointments. But you're there offering support and encouragement. 

You're setting it up with them. So, nobody has any time barriers and you're getting it done together. And then you can take the next step in. okay, they can call in and schedule an appointment, but especially with when you're starting younger and they're still minors, then you have mom right there saying, Yeah, go ahead schedule the appointment.

Dr. Mike Patrick: Now, that's a great plan and a way to start to get them involved and sort of taking ownership of this. But the same time, you don't want your 13-year-old planning a day that you have something at work going on. But partnering and then as they get to be 17 and now they can drive themselves to an appointment perhaps, then they are making the appointments for themselves. So that's a great way to sort of move toward autonomy. 

And then, even with management of insurance. I mean this is another pieces parts that maybe is a little bit later in the process, right?

0:21:12

Rebecca Furru: Yeah, I usually hold off on insurance talks till they're about 17, 18. That's a much larger component even for grown adults to really wrap our heads around.

Dr. Mike Patrick: Yes, yes. And so we've considered the medical components. What about really fostering critical thinking skills and independent thinking? How can we best do that?

Rebecca Furru: So, I think it's really about allowing the teenager to have that self-determination. And a lot of that really starts in the medical exam by the parents or the caregiver. Allowing the child to take the lead in the medical exam by reporting the symptom history between exams. Or on keeping a journal and even just providing the journal to the provider. 

But also asking the provider to direct the questions to the teenager. And kind of starting that process where you're still present and supportive and encouraging, but you're allowing them to have that opportunity to start speaking up and taking responsibility for their healthcare.

0:22:15

Dr. Mike Patrick: And that means in the earlier stages of this, as a parent, you really need to be a role model in terms of asking those questions. So that then your child can see, Oh, these are the kinds of questions that I should be asking at some point. And then sort of just naturally, organically letting that flow into one where now the child was asking those questions.

Rebecca Furru: Absolutely.

Dr. Mike Patrick: And if you're having trouble, and I say these both as a parent and as a patient, a teenager who is beginning to take more control over their healthcare, if you're having trouble thinking of questions to ask, there's always two areas that I think are really easy to jump on to. 

One again, we've already talked about, just understanding what's going on in terms I can understand, what's happening to my body? But the other, and we talk about this a lot on this program, is everything in medicine as we make decisions is about understanding risk versus benefit.

0:23:07

So if you are on a medication, one question you could ask is what are the side effects? What are the risks of taking this medicine? And then what are the benefits? And are we certain that the benefits outweigh the risk? And just having that risk-benefit conversation can give you some fodder for asking questions, if you're having trouble sitting there, thinking What do I ask a doctor?

Michele Buck I think that when you're considering health literacy, it's really important to look at everything that may impact this patient's care. And so some really easy questions that we recommend people ask are what's my main problem? What do I need to do about that? And why is it important for me to do that? Those are three really simple questions that you'll get some pretty straightforward answers to. 

Dr. Mike Patrick: And write those questions down before you go the appointment. Because a lot times, sort of in the heat of the moment, the doctor comes in and like, Aah, what do you know? You're not sure what to say and naturally they take control of conversation, which we all do. But having those questions written down can definitely be helpful.

Michele Buck Exactly.

0:24:10

Dr. Mike Patrick: Rebecca, how does this transition process affect parents? So, kind of talk about it from the child's point of view. And as a parent, you know the things to do to nurture that, but I almost feel more like from an emotional standpoint, letting go of your child is hard. And so, tell us how that affects parents and what they can do to make it a little easier?

Rebecca Furru: Absolutely. So, I do think for parents, it can be a very emotional journey because a lot of times our kids here at Children's are diagnosed very young in life. And even if they're not, it's very hard for parents to have a child diagnosed. All you want for your child when they're born right is that they're happy and healthy and that they live the best life that they can. So, any parents that have a child with a diagnosis, that's first of all a change in their emotional landscape. 

0:25:04

But I think a lot of what we can do for them must they really support them in reaching out to their natural resources. Those extended family friends, the extended family in the first place, those people that are already supporting them and they might not realize it because they kind of very focused in the day-to-day. 

And then, I think here at Children's, we offer great opportunity for even further connection with other parents and families who are going through similar situations through our Connecting Families Program. I love that program because I can't relate to a parent the way another parent can who's had a child with the same type of diagnosis. 
And I think that's a great place to start for helping them through that beginning emotional journey. Even at the beginning when they're diagnosed, not even talking about just the transition process.

Dr. Mike Patrick: And there's emotions on the part of the child especially when there's a chronic disease. But as you sort of shepherding your child toward adulthood, they're also a lot of feelings that you may experience as a parent. Lost of control, sort of worry, anxiety, are they going to be able to do this? 

And I just want to encourage parents that those are normal feelings. And that you're not the first to have gone this way, you won't be the last. And so, it may be helpful too for parents to sort of support each other in this process.

0:26:24

Rebecca Furru: We think it's also important when you're talking about emotions is to realize these are still teenagers that we're talking about. And they're still going to go through the same teenager developmental stages that everybody else's child is going to go through. And so I think parents need to be prepared for that as well. You're going to find resistance in your teen in a lot of cases. And probably a lot of push-back and maybe just a little bit of attitude, we all went through it. 

And so, I think parents really also need to be prepared for getting emotional support but also still giving support. And just keeping the encouragement and praising all the efforts that their teen is going to go through. And just realizing again it all goes back to that partnership. You're not alone and just helping each other.

0:27:04

Dr. Mike Patrick: And there's an ebb and flow to this, too. Like you may have instances where you think, Oh, this is going great. I really see more autonomy in my child. They're up on taking their medicines or asking the right questions, and then things may just fall apart for a few months. And then get better again and then fall apart. 

So, sometimes its couple steps back but then three steps forward. And so, again, don't be discouraged when things don't seem like they're going well. 

Yeah, absolutely great points all around.

Let's talk about when you have a disease diagnosis and management that is more complex. And in the early years of that, sort of the beginning of a transition, your child may have some difficult questions that they're asking. How do you, Michele, handle when your child is asking those tough questions about the disease?

I mean, it maybe one that really impacts their life. It may even be life threatening. How do you as a parent, when kids are asking these questions, what do you do?

0:28:07
 
Michele Buck I think it's really important to remember that there's not a wrong way to have that conversation as long as you're telling your child the truth. And it's okay to say, You know, I don't know the answer to that question. Let's ask your doctor the next time we go. And I think it's really important to let your kid know that they can continue to ask questions and this is the safe space. 

Typically, we see kids, they ask the information that they need to know. So they will stop asking questions when they feel like they've gotten their questions answered. I see a lot of patients that maybe ask, Well, why can't I run as fast as that other patient? And when you tell them, Well, it's because you have this is and it's going on with your muscles. And you are going to be a little bit slower than them, that's all they needed to know and they're fine with that answer. 

So, answer their questions in a developmentally appropriate manner. They're not going to understand genes and everything that goes into this diagnosis, but they do want to know the information.

0:29:05

Dr. Mike Patrick: I really like what you said. When they have the information that they want, they'll stop asking questions, and particularly in those young years. Maybe it's more important to answer the questions, help them understand what they want to understand, but don't overload them with the information that they might not need quite yet. That's also an important part of this.

Michele Buck Exactly.

Dr. Mike Patrick: And then, as they get a little bit older and are taking more control now, you do want them to have more information. We did and we'll talk about this more, we did a podcast for providers with Dr. Patience White, who's been very influential in this whole idea of transitioning from pediatric care to adult care.

And when she was on our program, on the CME program, and again we'll talk more about that, but one thing that she was an advocate of was just pulling out the kid's smart phone, opening up that default medical app that is on everyone's phone and having your child fill that out just with their information. Emergency contact information, disease, any medicines that they're own, any allergies that they have. 

So she recommended that. Is that something that you guys see happening in the clinics?

0:30:12
  
Michele Buck Yeah, we always recommend that. Rebecca and I also have it on our phone, as should every person. And so, we tell them that. And we'll take out their phone with them and go through it with them. It's also a nice little cheat sheet for the kid to have, right? Because the next they come in and somebody says, Oh, so what medications are you taking? They can pull out their phone and say, Oh, I have it listed here. And it helps them remember.

Dr. Mike Patrick: Other ideas for helping them to sort of start taking more control over their healthcare?

Michele Buck So, early discussions with the medical team, when the nurse comes in and does the triage at the beginning of the appointment and says, Who's your doctor? What are you here for? What medicines are you on? Encourage your child to answer those questions. They should know. 

0:31:00

And then taking medication, asking them to like be responsible for that at an earlier age. Obviously, if they're 12, you're going to want to help them a little bit more. And then, if they're 18, but encouraging them to say, Oh, is this the time that we take your medication? Maybe you should go get and take it, and I'll help you. Some early intervention things like that.

Rebecca Furru: I also encourage like a lot of us use our phones for alarms now. Set an alarm for your medications. If I'm supposed to take it at this certain time once weekly, set an alarm specific to your medications. If you set up a pill box, set an alarm weekly to set up your pill box with your parent or your caregiver and start learning what your medications look like in doing that. 

You can take responsibility for refilling your medications. CVS now has a little refill app. You can do that automatically through your phone. So, that's a great way for parents and teens to start doing it because a lot of teens now are much more connected to technology than their parents. 

And that's the way that teens can actually start helping their parents in ways that parents never understood they could take and get help for their child's medications. So, those are great ways to partner.

0:32:12

Michele Buck Also thinking incorporating things into your routine. Like, I am brushing my teeth, so I'm going to take my medicine while I'm brushing my teeth. Or, Every night, I watch this one TV show and so I'm going to do my PT exercises while I watch my TV show.

Dr. Mike Patrick: I love that this idea of partnering. So, when you think about transition from the parents' perspective, it does seem kind of like the message is, okay, your child's going to need to be an adult. So, if you're kind of task oriented, like, okay, I need them to start doing this at this age and then doing this at this age. 

But really, the more that you sort of just do things together, then your child will see, okay, this is what I need to do. And just sort of naturally flows that they begin to do it themselves, not because their parent told them to, but because they are used to it, because you've done it together for so long. But it takes the effort of being together and doing things together which can be difficult for busy family.

0:33:07

Michele Buck And if you really are very task oriented, there are checklists out there that you can go through a checklist and say, These are the things my child needs to be able to accomplish to be able to transition successfully.

Dr. Mike Patrick: Yeah, kind of like transition milestone.

Michele Buck Yes.

Dr. Mike Patrick: Right?

Rebecca Furru: Absolutely.

Dr. Mike Patrick: With age ranges I would expect, right?

Michele Buck Yes, exactly.

Dr. Mike Patrick: Now, there are barriers in this process. Michele, what kind of barriers and difficulties can parents expect as they're doing this?

Michele Buck So, we already talked about emotional barriers for parents and children. But they may also be barriers when you're interacting with your medical team. Your medical team might not have a transition policy or program. And so you might have to take a little bit more of the lead in this and say, I'm really trying to make it so that my child can take control of their own medical care. And so, please direct your questions to them. Or encourage your child to interact with the medical team. 

And so, you may have to educate your medical team a little bit of what you're trying to do in order to make it happen.

0:34:11

Dr. Mike Patrick: From the provider point of view, I think you make an excellent point. I mean, some people have an interest in transitions. Some other providers, it may not be that they don't have an interest in but it's just not on their radar. Maybe they've not really heard of this concept before. And you get to be 18 or 21 or you graduated from college, depending on the practice, then their whole transition program is a letter that says you need to find someone else.

And if they haven't really heard about the importance of having more of an organized transition program, it may not completely be their fault. But maybe you're the parent that clues them in, Hey, there are resources out there to help with this. And I want to share those with you. And maybe if the particular provider hears that enough times, then they'll take them up on it and listen to those and view those resources to kind of figure out how to put a transition program together.

0:35:03

And one resource that you could direct them to is the CME podcast that we did with Dr. White. And again, we'll give folks the information on how to connect with that here in just a few minutes. 

So, there are barriers in terms of the child's development, possibly the providers. Do you come across the issue of parents not wanting to give up control and how do you encourage parents to start letting go?

Michele Buck So, that is a very regular barrier that we encounter. It's hard for a parent to say my child gets to control these things now. Especially when we're talking about somebody who's 12 or 13 and even 17-year-olds who doesn't always seem like they're able to control everything that we need to control as adults. But we try to remind them that it's their role as parents and they're the only people that can give this gift to their child. They're the only people that can give this gift to their child. They're the only people that can truly prepare their child for what it's like to be an adult.

0:36:03

Dr. Mike Patrick: I think for us sort of Type I personalities and you're controlling things anyway, and there are a lot of parents like that including myself, it is more difficult to give up that control. Because you think, Well, this is what I would do in that situation. And I think I raised my child up to do what I would do. 

And so, it can be sort of frustrating and difficult, but on the same time, the goal is for your child to become a functioning well-adjusted adult who's making good decisions. And so, there definitely is that that pull that can be difficult.

One other barrier that I think we got to talk about is on the adult side. So there are also providers on the adult side that once child has sort of transfered their care, and so you hope that they have also transitioned to young adulthood at that point. But if they're not up on things, it really might fall to the cracks because in the adult world, the adult providers are less likely to sort to call you to say, Hey, why aren't you scheduling an appointment? or Why aren't you being compliant with your medicine? or Why aren't refill requests coming through? 

0:37:09

And so, we can see kids who are getting really good care in the pediatric world not getting as great of care, sort of slipping through the cracks in the adult world. Not because they have that providers, but because they haven't really made that transition. And then sometimes, as parents, you do still need to be a part of this even past age 18 to make sure they aren't slipping through the cracks. Do you see that as well?

Michele Buck Yeah, we do see that. And sometimes, you're lucky enough to be in a clinic here at pediatric setting where we can continue to help with the transition. But you're not always lucky enough to get that, unfortunately. 

And that's why the parents' role in this is so important. And I think it's just like you would recognize that your college students going to come home during the summer, still in college. And you're going to have your kid back there again. 

It's the same kind of a thing where you are going to sometimes be very involved in your child's care at any age. And you're sometimes going to have to take a step back. And so, it's really important during that transfer of care that you are taking a more active role in helping them understand what needs to be done.

0:38:15

Dr. Mike Patrick: One of, yeah?

Rebecca Furru: I was just going to say I think Michele said it beautifully earlier when she said only parents can give that gift to their child and really helping them kind of start preparing for that actual transfer to an adult provider. Because adult providers, just in general, lack all the social supports that we try to give in pediatric care like social workers and available psychologist in child life, and lot of the extra social support individuals that we do try to give here. 

And I think that is a very, very big change. And so, Michele is right, having the parents involved in the initial transfers is very important, but it can also be very hard to stay involved when the adult provider is saying, Your parent can't come back in the exam room. You're an adult. You have to come and meet with me alone. And if you haven't really helped them prepare for that, it's going to be very, very difficult to meet that transfer of care.

0:39:14

Dr. Mike Patrick: And it's still okay though to say, okay, fine, you can see them alone, but I do still want to be in the room at some point so that we can… There may be questions they have that your child isn't comfortable asking the doctor by themselves, but they were asking you at home. And you want to make sure that that question gets answered. 

And you could see how a 19, 20-year-old would have that, especially if they're more of an introvert, kind of shy. So you still want to be your kid's advocate at the same that you're encouraging autonomy. And that can be kind of a confusing role that you just sort of have to go with depending on your family, and your kid, and the context and situation, right?

Dr. Mike Patrick: Rebecca, I also really like what you said in terms of helping your child figure out resources that they can use. Because even once they've transitioned to adulthood, we still all need support and help. And they may not remember something about their past, and they can't get a hold of their parents right away. So it is a good idea like emergency contacts that you know and can't get a hold of. 

0:40:08

Resources of school even, not just family and friends, but is there a teacher that you have a particular connection with, or the guidance counselor, the school principal? Or just during the day, if you're having an issue and you can't get a hold of mom or dad, even just learning to make the decision to talk to someone rather than keeping it to yourself, whether it's physical problem, an emotional mental health issue, it's good to have all of those networks and connections. And parents can encourage that too, right? 

Rebecca Furru: Absolutely. So I think one of the biggest supports that really people don't realize is when we send our kids off to college or even vocational academies, they have student health resources in all of these places, even if that's just a nurse. 

And that can be a huge resource for these young adults because that can be someone who's very grounded in their day-to-day life. That they don't necessarily have to see all the time, but can be a really great point of contact and saying, If I'm going through my daily schedule and I'm starting to have a problem, I have someone I can immediately go to. And I can talk to about what's happening, in case mom and dad are working full time and I can't reach them immediately. Or I'm two hours away from home because that's where I decided to go to school or that's where I ended up working. 

0:41:26

Just having that point of contact, but I think it's also really important to realize that the medical app we talked about is actually also can be set up for an emergency. And so, you can access, anybody can access it on their phone in emergency mode. And so you don't have to unlock your screen for anybody to find out where your medical status is and understand medication interactions to call EMS for you and get you help.

So if you're really introverted, I'm admitting it out there into the world, I'm a social worker who's an introvert. I don't necessarily usually tell people my medical stuff. It's right there on my phone. If I'm having a problem, I know that anybody can help me. Call EMS, it's on my phone. 

0:42:05

Dr. Mike Patrick: It's funny because I'm an introvert, too. And you would think that someone who does a podcast and can talk, but no, I just kind of shut down every time the microphone's off, you know. 

So I think that this is just also important. And we talked about how much more difficult and complex the world is today. But on the flip side of that, in terms of networks and connections and support, it's also a lot easier today than it was. 

When I went to college, we had one phone down the hall. There was no email, there was no texting. There was no instant being able to get a hold of someone. And that really made it even more important to form those sort of face-to-face connections wherever you were to find support. But with technology today, it is so easy to get in touch with mom or dad when you need to. I guess that's good and bad. 

[Laughter]

Rebecca Furru: That's good. But I think also a really great resource is very diagnosis specific. But there's a lot of foundations out there now that are really trying to answer that support question because we recognize that there is a lack out there for people who deal with chronic illness and have lifelong medical needs. 

0:43:20

And so, I come from rheumatology background here at Nationwide. And so the Arthritis Foundation has an online program, iPeer2Peer and it's an online platform for you to reach another individual who deals with the same exact thing, same diagnosis, same medical concerns, same treatments. It's a way that you can reach out to other individuals without maybe having to go through it awkward face-to-face component that some people may not feel comfortable with. And so, I think that's another area that people don't always talk about or maybe even think to search out. 

Dr. Mike Patrick: And not only to get your questions answered but then as you journey and folks come behind you, then you can be that resource. Someone helped you and now, you can pass that along with forums. But then, you also have to realize that sometimes you get bad information and maybe check a couple of resources and just be aware, but definitely can provide lots of support for folks.

0:44:15 

So Ohio State has something pretty, I think, unique called the CATCH Program. Tell us about that. 

Rebecca Furru: I love that program. 

[Laughter]

Rebecca Furru: So the CATCH program is actually basically a primary care physician's office through the Ohio State Wexner Medical Center, that their main focus is actually to help the transition process for chronically ill young adults into the adult medical system. 

And so, they are actually a very unique system that has an available social worker mental health resources, a psychologist. They have a nurse practitioner and they've got doctors available. And so what they're really doing is helping kind of fill not only a medical, but also like a social support that's really helping our patients answer that question of how do I transfer my care from my pediatric doctor to an adult doctor? 

0:45:13

And a lot of times, when we're around a specialty practice here in pediatric care, we act a lot sometimes as a primary care doctor, just because we see our patients so much, way more that they would see the normal primary care. And so what they're really doing is helping us. Because in adult system, a specialty doctor's just a specialty doctor. They're not going to deal with anything else. They might see you six months, a year maybe. 

And so they're really helping fill that gap for our patients and helping them figure out how do I fit in to this new system?

Dr. Mike Patrick: Yeah, that's a really fantastic resource especially for teens and young adults who have complex medical diseases that require lots of care. 

I'm going to put a link to the Ohio State CATCH Program in the Show Notes for this episode, 402, which folks can find at PediaCast.org. And not just for people in Central Ohio who might think they could benefit from getting connected to that program. But if you're not in Central Ohio, and you're interested in starting something like this in your area, I would encourage you to check out that link, check out the program.

I'm sure that there are folks that are affiliated with that program that you could call and talk to. How do you set something like this up in a different city, which could really make a big difference in the lives of families? 

0:46:27

So definitely check that out. I'm going to put a link into it in the show notes. 

Sort of moving on to legal considerations. So we talked about the transition process. The goal is when they're 18 years old, realizing that it may not be complete at 18, but there are some legal issues that go along with turning 18 years of age. Michelle, tell us what those are. And they differ a little bit from state to state. 

Michele Buck So the most obvious one is HIPAA. Once you turn 18 and you're legally an adult, and your doctor will no longer give information to parents without written consent to be able to do so. So once your teenager turns 18, then they're legally in charge of their own medical care. And they have to voluntarily sign a release of information for us to be able to communicate with US parents. 

So that's the biggest one. Here at Nationwide Children's Hospital, we also have an outpatient code that allows us to talk to you on the phone, that you need to know that in order for us to give you any information. That will be changed at age 18, too. 

0:47:33

Healthcare power of attorneys are a big one. Every adult should have one, and your social worker will probably talk to you about it in clinic. But that's something that's really important for anybody to fill out, that helps you to have your decisions for end of life or if you're unable to make medical decisions. They're very clearly laid out in a legal way. 

Dr. Mike Patrick: And financial power of attorney can be important as well, as the medical side of it, and there's bills. And maybe a parent still needs to sort of help figure out financial kind of stuff. So that's something else. You've talked about that sometimes? 

0:48:08

Michele Buck Yeah, we talk about that more in the umbrella of durable power of attorney which gives permission to do a lot more than just financial and healthcare. 

Dr. Mike Patrick: Great. What about folks who really have very complex diseases and maybe significantly developmental disabilities and they might not really be able to make this transition because of cognitive issues? Maybe they really aren't to the point where they can make decisions for themselves. How does a parent who has a kid like that sort of walk them through? How can they continue being the parent for them even after they turn 18? 

Michele Buck So that vary state by state but there is guardianship, adult guardianship that you can pursue through the probate court. This hopefully is a conversation that you've been having with your medical team for a long time before your child turns 18.

Dr. Mike Patrick: Hopefully. 

0:49:02

Michele Buck Yes, where you can assess their cognitive skills and their functioning in everyday life and decide if this is something that's necessary for you. I find myself talking to parents a lot about how important it is for them to actually file this paperwork. Because your child may live with you, but if they're legally an adult, then they're still legally allowed to make all their decisions. And they may talk to you about things, but if in an emergency situation, people can't get a hold of you, then that child is still responsible for making those decisions. 

Dr. Mike Patrick: And if you are thinking about doing this, and with the guardianship. And maybe you haven't talked to someone yet, ask those questions. It's really important to ask early, and the parents out there who have kids who may not be able to make the transition because of very complex severe diseases, especially as they affect the central nervous system and our decision-making ability. And this is where social workers can just, you want to be in contact with the social worker early because they're going to anticipate what kind of issues you're going to come across and how to successfully navigate those. 

Michele Buck Exactly. 

0:50:10

Dr. Mike Patrick: Here in Ohio, we do have an Ohio Guardianship Guide through the Ohio Attorney General's Office. And I'll put a link to that in the Show Notes, PediaCast.org, Episode 402, if you like more information on guardianship.
 
Again, this is an Ohio-specific one, but probably the Attorney General's Office for your state, if you do a search for "guardianship attorney general" with your state name, Google it, you'll probably figure out the resources. Or ask a social worker because they can definitely put you in touch with those. 

So tell us, Rebecca, more about the role of social work in helping families with transition. Let's start there, just tell us how do folks get connected with you as they're going through this transition process. 

Rebecca Furru: Sure. So the most basic way their families can get in touch with their social work is to go through the medical team. A lot of us are embedded within the medical teams and the clinics in our specialty areas. And so if you just ask your team if it's not directly offered to you, we're always available. 

0:51:14

Our primary role is to enhance resilience and self-efficacy in families and help mitigate barriers. And I kind of think that speaks directly to transition process. We shouldn't be definitely helping partner with our families and advocating for those things. Whether that's helping a parent figure out how to developmentally talk to their child about their diagnosis, explain the treatment process, or how to facilitate conversations between parent and teen and the medical team. If you're in that situation where the medical team may not already have a transition process kind of solidified and the family's trying to navigate, well, how do I get the team onboard with this process? 

And on a fundamental level, we're really here for whatever families need from us. And if we're not the people that can help, we're certainly those navigators in systems. We're there to try and figure out where we can connect you. 

0:52:14

Dr. Mike Patrick: I think we rely on social workers so often for these kids and for lots of different reasons. And I just love that social work is embedded in so many of our specialties here. It can be more difficult for people who live in more rural areas. And maybe there aren't these resources. How do folks where the social work is not sort of automatically connected to them, how can folks get connected with the social worker just out where resources are a little thinner?

Michele Buck So I think that some really good resources are your departmental or developmental disabilities. And if you live in Ohio, we have opportunities for Ohioans with disabilities. Opportunities for Ohioans with Disabilities houses our Bureau for Vocational Rehabilitation and there should be one of those in every state. 

They help specifically with transitioning to adulthood. They may not necessarily do medical stuff, but they will help with jobs and school and how to be functioning on your own independently as an adult.

0:53:17

Dr. Mike Patrick: And it doesn't matter which county you live in, you have access to this as a resource, correct?

Michele Buck Correct. 

Dr. Mike Patrick: And I'll put a link to Opportunities for Ohioans with Disabilities in the Show Notes as well over at PediaCast.org, Episode 402, so folks can find that really easily.

What are the resources out there especially on the Internet, as we think about transitions, can parents tap into?

Michele Buck So there's GotTransition.org, just like your last PediaCast had. And that is a great place to find information. They have all different kinds of checklists and specific topics for providers, parents, and kids. 

Dr. Mike Patrick: And I love that, and even policy makers, too. So regardless of what your hat is, if you're a parent, if you are the teenager, if you're a provider, if you are a lawmaker, as we think about transitions and helping teenagers become young adults, you'll find something useful for you at GotTransition.org. And I'll put a link to that in the show notes as well. 

0:54:18

We'll also have a link to the Ohio State CATCH Program. As I mentioned, Opportunities for Ohioans with Disabilities. And then, there are also some other children's hospitals that do have very well-developed transition programs. We have a very well-developed one here.

But if you look around other sites, you may find some good stuff. And so I'm going to put links also to the transition program at the Hospital for Sick Children in Toronto, the one at Lurie Children's Hospital in Chicago, and Nemours in Delaware. Obviously, we love Nationwide Children's Hospital, but we want to put great resources into the hands of everyone between all of these things. And we'll have links to all of this in the Show Notes. We just want parents to have all the resources at their hands that are good to help with this process. 

0:55:03

Rebecca Furru: I love all the resources that you named. But especially, I love the Nemours because they actually have videos. And so, if you're questioning how do you have some of these difficult conversations or what does it look like in that process, they have a very wide ranging types of videos that speak directly to the teens and directly to parents. They even have some that are direct to providers. 

And so that's a fantastic resource if you're a much more visual learner. Because a lot of it, obviously, is a lot of written resources in some of the others. And so if you're visual, that's a fantastic resource. 

Dr. Mike Patrick: And Nemours is also really advanced in terms of media and health literacy. And so, they're the folks behind Kids Health that we have sometimes shared resources I hear from Nationwide Children's and through this program. 

So yeah, great resources all around and we'll put those in the Show Notes for this Episode 402 over at PediaCast.org.

0:56:03

All right, well, I think we've talked about transition. We have put resources into your hands. We have kind of touched on the fact that we've talked about this before with Dr. Patience White. And that was on our CME program, PediaCast CME. It was Episode 25. 

And for those of you who have not heard of this, it is our program for pediatric healthcare providers. It offers Category 1 Continuing Medical Education. And we did a whole transition program really from the provider's perspective for pediatricians, family practice doctor, internal medicine, pediatrics, providers, nurse practitioners, physician assistant. So it's a really great resource if you want to learn more about transitions. 

And please feel free to share that program with your primary care provider, especially if they've not really heard or have a well-developed transition program that may help them out. And I'll put a link of the PediaCast CME Episode 25 also in the Show Notes with my interview with Dr. Patience White. She's from George Washington University and the Center for Healthcare Transition Improvement and was really very involved in GotTransition.org. So I'd encourage folks to share that for sure. 

0:57:16

And then, one final thing. And I think social workers should be interested in this. Next week is Screen-Free Week in the United States. Brought to you by over 100 organizations including the American Academy of Pediatrics, and just the list goes on and on of the folks who were kind of behind this. And the idea is just for one week, just to unplug from digital entertainment and get outside. 

We've got some nice weather here in Central Ohio. Enjoy some outside time together as a family, play some games, tell some stories. Just give up the digital entertainment, except for podcasts. Podcasts are still okay to listen to because you can do activities while you listen. I'm just kidding. 

[Laughter]

Dr. Mike Patrick: But take a break from podcasts, that's fine as well. But folks will find information at ScreenFree.org. And I'll put a link to that in the Show Notes as well. So I would definitely encourage to take advantage of Screen-Free Week next week. Again, all the information is at ScreenFree.org. 

0:58:12

You guys think that's a good idea, right? 

Rebecca Furru: Absolutely. 

Michele Buck But hurry up and put your emergency contact information on your phone before Screen-Free Week! 

[Laughter]

Dr. Mike Patrick: Yeah, well, the folks at Screen-Free Week say, okay, except for homework and work, you still need screens to function. But just in that time when you get to pick what you're going to do, for one week, let's just pick something that is not digital. And I think we'd all be better off for it. 

Rebecca Furru: I think people with sleep problems are going to see that their sleep improves massively when they're not staring at the screen all the time. 

Dr. Mike Patrick: Yes, absolutely. Absolutely. 

All right, Michele Buck and Rebecca Furru, clinical social workers here at Nationwide Children's Hospital. Thanks so much for stopping by and chatting with us today. 

Michele Buck Thank you. 

Rebecca Furru: Thank you. 

[Music]

0:59:26

Dr. Mike Patrick: All right, we are back with just enough time to say thanks to all of you for taking time out of your day and making PediaCast a part of it. We really do appreciate that. 
   
Also, thanks to our guest from the Department of Clinical Social Work here at Nationwide Children's Hospital. Really appreciate them stopping by and sharing their expertise with us. 

Don't forget, you can find PediaCast in all sorts of places. Maybe there is an easier way for you than the way you came across it today. We are in iTunes and the Apple Podcast app, also Google Play, iHeart Radio, Spotify. Really most mobile podcast apps, you should be able to find us. Simply search for PediaCast. 

1:00:01

We also have a landing site where you will find our entire archive of past programs, 401 of them to be exact. Also, all of our show notes are there, transcripts of each programs, our Terms of Use Agreement, and that contact page so you can ask questions and suggest show topics. We always appreciate that. That landing site is available at PediaCast.org. 

Also, don't forget, reviews are really, really helpful. I and probably many of you, when you're thinking about trying something new, you look at the reviews and see what other people think, whether it's researching products at Amazon, services, Angie's List, movies, TV shows. And oftentimes, you use Rotten Tomatoes, for example, to read reviews on those before you give them a try. 

And the same is true for podcast. So if you have not left a review for PediaCast in the place where you typically listen, please consider doing that. It only take a couple of minutes and they'll just help other families and parents, moms and dads, who travel the journey that you're on but a little farther down the road behind you. And as they are looking for a helpful evidence-based pediatric podcast, maybe you could write a few words that would convince them to give us a try and see what they think. And hopefully we can all continue to learn together as we strive to be better parents. 

1:01:22

You can also follow us on social media. We are in Facebook, Twitter, Google+ and Pinterest, also LinkedIn. 

And of course, we always appreciate it when you tell others about the program, sort of face to face, your family, friends, neighbors, coworkers, baby sitters, grandparents, anyone who has children or takes care of kids. And of course, that includes their educators, preschool teachers, school teachers, and of course, his or her medical provider.

And while you have their ear, let them know we have a program for pediatricians and family practice doctors, nurse practitioners, physician assistants. We have a program for them too which provides Continuing Medical Education. That show is similar to this program. We do turn up the science a couple of notches and offer free Category 1 Continuing Medical Education for those who listen. Shows and details are available at the landing site for that program, which is PediaCastCME.org.

1:02:15

That show's also on iTunes, the Apple Podcast App, Google Play, iHeart Radio, Spotify, and most mobile podcast apps. Simply search for PediaCast and put CME after the title. 

Thanks again for stopping by and until next time, this is Dr. Mike saying, oh, and don't forget, next week is Screen-Free Week. You can check it out at ScreenFree.org and they'll give you some helpful hints on unplugging from digital entertainment except for podcasts, just for one week. And that's next week. We'll talk about it more when I see you next time. 

Until then, stay safe, stay healthy, and stay involved with your kids. So long, everybody. 

[Music] 

1:03:11

Announcer 2: This program is a production of Nationwide Children's. Thanks for listening. We'll see you next time on PediaCast.

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