HLOL Podcast Transcripts

Health Literacy

Helping Teens Transition from Pediatrics to Adult-Centered Care (HLOL #132)

Helen Osborne: Welcome to Health Literacy Out Loud. I’m Helen Osborne, President of Health Literacy Consulting, Founder of Health Literacy Month and your host of Health Literacy Out Loud. In these podcasts you get to listen in on my conversations with some really remarkable people hearing what health literacy is, why it matters and ways every one of us can improve health understanding.

Today I’m talking with Corey Ellen Nouri who is a transition social work coordinator at Nemours/Alfred I. duPont Hospital for Children in Wilmington, Delaware. Corey supports young adults with disabilities and special healthcare needs as they transition to adulthood.

Corey is active in research and advocacy work, serves on numerous advisory boards and frequency gives presentations about young adults’ disease management and transition in healthcare services. Welcome, Corey.

Cory Ellen Nourie: Hi. Thanks for having me.

Helen Osborne: I’ve long been interested in what happens in that gap or changeover between when children go to the pediatrician with their parents and then all of a sudden they are responsible for their own healthcare as they go to adult medicine. I just recently learned there was a name for that and it’s called transitions. Then I met you and heard that’s exactly what you do.

Let’s take it from the beginning. What is this transition all about and what’s involved in it?

Cory Ellen Nourie: The reality is that every child will eventually become a young adult and eventually a full adult and then an older adult. Whether people are prepared for these transitions in life or not, they’re going to happen.

The idea of healthcare transition is having a planned, purposeful movement from the pediatric-centered environment into the adult-centered environment for healthcare things and for social services and supports as well.

Helen Osborne: Okay, so it’s planned, purposeful movement.

Cory Ellen Nourie: Yes. There should be no surprises and there shouldn’t be actual transfer of care which is one day you see a pediatrician and then the next day you see an internal medicine doctor. It should be a transition where everyone’s working together on the same page, making sure that everybody is working toward a shared goal of having that young adult be as independent and responsible as possible for themself.

Helen Osborne: When does that happen in life?

Cory Ellen Nourie: Well, it kind of happens in different stages depending on somebody’s developmental level as well as what’s going on in their life and their social situation. In this program we typical say that transition planning should start around the age of 14 or so, and that’s a formal discussion.

The goal ultimately is that transition and actually planning for the future is always happening even when a child is a baby or first diagnosed with a medical condition with the idea that people are looking forward to what they want someone’s outcome to be like.

Helen Osborne: You start figuring that out when they’re little children but really start focusing on it when they’re about 14. What is that age cutoff at the top? Is there an age cutoff?

Cory Ellen Nourie: That’s actually a very funny question. There’s not a definite end where suddenly everyone becomes completely independent and on their own. If you look at the literature, they’re talking about this idea of emerging adulthood, which is up until the age of 30 or so.

We think about frontal lobe development and those sorts of issues. Even when someone turns 18 they still have a whole lot of learning to go, even by the time they’re 22.

Helen Osborne: They’ve got a lot of learning to do but when does somebody really need to say goodbye to my pediatrician and hello to my adult medicine doctor?

Cory Ellen Nourie: It depends on which system they’re in. Some systems like the one that I’m in actually have an age cutoff of the age of 21 but depending on what system someone’s service is in, it could be 18, 22, or 25. With the ACA now some people are even going to 26 because they have their parent’s insurance until age 26.

Helen Osborne: Okay, but somewhere this happens. You just stop going to your pediatrician. I know your special focus often includes kids with disabilities and chronic healthcare needs. Are we talking about all kids whether they have diagnoses or not as they go through this transition?

Cory Ellen Nourie: Absolutely. They do and sometimes it happens whether people are really focusing on it or not.

A lot of times there are skills we assume that young adults are assuming through osmosis from watching their parents but without formerly talking to young adults and walking them through the process or steps it can actually become quite an abrupt slap in their face to realize that “Oh wait, I don’t know how to do this,” or “I’m away at college. My mom has always done this for me. What do I do now?”

Helen Osborne: You’re talking about doing “this.” What are you talking about when you say “doing this?” What’s included that someone needs to learn and acquire those skills?

Cory Ellen Nourie: With health literacy the goal for these young adults would be things like knowing the medications that they take on a daily basis. That could be something as complicated as somebody who takes a seizure medication or somebody who uses an inhaler to control asthma and everything in between.

A lot of times what’s happened is that the parent has been the one who has been in charge of that or controlled that medication administration for the childhood. Then the person is a teenager or going away to high school, going away to college or moving out into the adult world and things come up like “How do you refill a prescription? What happens if I start to run low on my prescription? What’s the side effect of this medication?”

Helen Osborne: So it’s not just taking it.

Cory Ellen Nourie: It’s all those skills that the parents have done for their children their entire lives. We need to make sure those children who are now adults are ready to continue on and become responsible in managing those things themselves.

Helen Osborne: How would that transition happen? I know you teach families. You teach everybody involved and I’m curious who else is involved. But let’s just focus on the child right now. What would this child need to know and how would you go about teaching it?

Cory Ellen Nourie: When someone is taking a medication such as a chronic medication. For managing that we want that young adult to be able to figure out how to actually refill that prescription.

I often use the analogy that if this young adult knows how to go online and order something, order music or download a video, they have the right skills. They know how to refill a prescription. It’s just a different website or it’s a different app on their phone.

Helen Osborne: I hadn’t thought of how similar it was. That’s why I’m laughing. Of course.

Cory Ellen Nourie: It’s just going to a site and updating some information and making sure you’re accurate in what you’re doing. We talk about using that skill and actually say “Okay, if you can do that then let’s look at your iPhone or your Android right now and look at what pharmacy you use and see if they have an app.

“Oh my gosh, you can download that barcode right now and scan it and you’ve just refilled your first prescription.” A lot of times the parents have just been the ones who have done that.

Even thinking about every day “I need to take my medicine.” We have young adults we work with where the parents were still giving their teenage children their meds every morning and every night and the reality is, “You don’t want your parent going to college with you, do you? You need to learn how to be responsible and take it yourself because otherwise you’re going to have that nagging parent which no teenager wants.”

Helen Osborne: You’re talking about taking meds. It’s not just popping a pill but also maybe an inhaler, an injectable or something you put on your skin. Meds come in all varieties these days. How would you teach that to a child? I keep saying child. I guess I’m referring to anybody who still goes to a pediatrician. I think you might call that person a teen or a young adult but all those words mean the same.

Cory Ellen Nourie: They all mean the pediatric patient somewhere. We could actually talk about a very young child. Let’s say you have a four-year-old or a five-year-old who has diabetes. One of the skills that we would work on with both the parent and that child is to say “Okay, you know that after you eat a meal you need to go get your insulin.”

Instead of having the mom or the dad go to the refrigerator and get the insulin to do the injectable, it becomes a conversation to say “Hey (whatever your child’s name is), now is the time to go get your medicine.” Then that child can go to the refrigerator, get the vile and bring it to the parent.

Then eventually as that child gets older and older the responsibility starts to shift and the parents can explain in age-appropriate terms “This is what we’re doing and this is why we’re doing it,” so that by the time they’re 16 or 17 years old they’ve got this. They know what they’re doing. The parent can go away and that child is going to be safe and healthy.

Helen Osborne: I love those examples. You’re making it so real.

CCory Ellen Nourie: Thanks.

Helen Osborne: Are there any hiccups along the way in doing that? It sounds very straightforward.

Cory Ellen Nourie: Oh there are plenty of hiccups.

Helen Osborne: By hiccups, for anyone listening or doesn’t understand, I mean problems doing this. It sounds so easy, but I bet it’s not.

Cory Ellen Nourie: It’s really not. One of the biggest things that we do in transition discussions is talk to parents about sometimes breaking that mold of taking care of and doing for their child. The transition discussion is more times often about the parent letting go of the control as much as it is about that young adult rising to the occasion.

We talk about strategies of trying to not have the parent bother so and so and say “Did you take your medicine this morning?”

Instead, we offer suggestions of having a chart where as soon as the teenager takes their pill in the morning they put a check on the piece of paper. The parent walks by the kitchen counter and looks at that paper. If there’s a check on it, the parent doesn’t say a word. That way, they know their child has taken the med and they can move on.

If there’s no check there then that’s the invitation that the teenagers are giving the parent to say “Hey, it looks like there’s no check here. Did you take your meds today?”

We try to give people strategies so that way they can be as independent as possible but still have that safety net there from their parents or their adult caregiver who’s making sure that everything is still okay.

Helen Osborne: I really like that because I know, having had teenagers myself a while ago, that they balk the more you get on their case. You’re setting up a system so that it’s not just based on nagging at this point or the parents worrying. I would imagine a parent who has a child who has something the matter with him or her is very worried about that child’s health.

Cory Ellen Nourie: Absolutely, and the way the pediatric world has been set up is that we’re a very nurturing environment and the providers oftentimes have the similar struggles as the parents do in kind of giving that responsibility to the young adult patient to become more responsible for themselves. We have the same conversations with our providers as we do with the parents and the young adult.

Helen Osborne: Really? The providers aren’t willing to give up that responsibility to the child? Tell us more about that.

Cory Ellen Nourie: A lot of times when people go into pediatrics, the expectation is they’re working with parents. The doctor is prescribing the regimen, the parents are the ones who are actually enforcing it and doing the medical management at home and the child is the receiver of care.

For the transition, the roles start to shift and the goal is that eventually that young adult patient is the one who is responsible for managing themselves medically. That means that both the parents and the providers have to also shift responsibilities and gears a little bit and direct things more toward the young adult.

For instance, in pediatrics for a teenage patient, we want that doctor talking directly to that patient. One of the things that bother me the most is when I walk into an appointment and the doctor looks at the parent and says “So Mom, tell me what’s wrong with your child today.” I think, “That child can tell you what’s wrong. It’s their body.”

I think the idea behind health literacy is that these young adults are empowered to be able to realize that they have control over their body and that they have to take care of it so we need to give them as much knowledge as possible to encourage them, knowing that the rest of their life in the adult world the expectation is that they know how to take care of themselves.

Helen Osborne: I also just love that image you have of the provider or clinician talking directly to the patient. I would think that could start at even toddler age. I don’t like being talked about if I’m in the room.

Cory Ellen Nourie: Absolutely, and we talk about it even in the context of someone checking into a doctor’s appointment. If you have a parent and a young adult patient going to a pediatrician appointment, my goal is to have that front desk staff talk to the young adult and confirm who they’re here to see and to go over some things that young adult knows.

They know their name. They know their doctor’s name. They know what time their appointment is. All of those responsibilities that typically the parent has done the talking for, we want that responsibility to shift to that young adult to say “Yes, I’m here for my appointment today for my physical at 2:00. Here I am.” That’s all it takes.

Helen Osborne: It’s really everybody in this one it sounds like. Are there other problems there that we need to be aware of? I’m thinking of our podcast listeners now. Maybe they are working in public health, let’s say. When you’re talking about a healthcare clinic or what about if they’re in public health, how can we help young adults or older teens start being responsible and taking care of themselves?

Cory Ellen Nourie: There are some things that we want every young adult to carry with them and to know about themselves. That way, they can go into any setting and be successful. That would be things like carrying some form of identification whether it’s a driver’s license or a state-issued ID.

Sometimes families say “Oh, they have a school ID,” which doesn’t really help as much because it’s only valid and really useful if the school is open and someone could say “Oh yes, they’re a student here.” A state-issued ID is the way to go. We want every teenager to have a copy of that and to be able to present that at check in, to the pharmacist or to any doctor they go to, to say “Yes, this is who I am.”

A lot of times now they just scan an ID into a lot of records and so we want that teenager’s ID to be the one that’s actually in the record too. We also want teenagers to carry a copy of their own insurance card and to know what kind of insurance they have.

That’s a basic skill but for somebody let’s say who’s on a medication for ADD or ADHD, by the time they move to the adult world, oftentimes those medications require prior authorization from the insurance company.

If you ask the young adult what prior authorization means from their insurance company they’ll look at you like you have four heads. They have no idea because their parents have been the ones who have been responsible for the insurance issue.

Give young adults the skills and the knowledge by saying “This is the insurance that you have. Here’s your card. You’re responsible for carrying it. If you ever need services you call the number on the back of the card and get used to figuring out who to talk to when you need something from your insurance carrier.”

Helen Osborne: You gave an example too about prior authorization. Is part of this work we do in health literacy teaching people terms they need to get familiar with?

Cory Ellen Nourie: Absolutely. There’s a lot of work we do in focusing around the realities of the way the healthcare system is set up so big words like “prior authorization” or understanding what the ACA is or how your insurance works and if you have a managed care organization or not are all things that are really important.

Again, we expect that by the time they get to the adult world the adult healthcare providers are going to expect that the young adult knows this. In the pediatric world we expect the parents know it and there is a gap in between where we need that young adult to learn these things and be able to be responsible so they’ll be an engaged consumer in the adult healthcare setting.

Helen Osborne: That’s neat. You’re not just teaching them about what’s wrong with them and how their own bodies work but how the system works and how to interact with that system.

I have one other question just about teenagers. I get the sense that many of them feel “I’m invincible. I can eat this greasy burger today and I can eat a greasy burger tomorrow and I’ll be fine.” Developmentally I don’t think that they see the consequences that might come up in 20, 30 or 40 years from eating greasy burgers every day.

Do you figure that in there about their own developmental sense of the future and risks and vulnerability?

Cory Ellen Nourie: Absolutely, and I think what happens is that with pediatrics we’re used to these pediatric-onset conditions. When somebody diagnoses, the parent typically is the person who hears that information and it’s shared. They’ve got a lot of research and a lot of information about how to manage it for the rest of their child’s life.

Again, in the adult world, that young adult still has a pediatric-onset condition but the adult doctors are going to expect that that child understands what their condition is. We’ve had situations where we’ve had children who have been diagnosed with leukemia at a very young age and they may have some late effects from the chemotherapy or something like that.

By the time they get to the transition discussions the parents are saying “Oh, they don’t know they ever had cancer. We don’t want them to know that.”

Helen Osborne: Oh, they don’t even know their own history.

Cory Ellen Nourie: That’s correct. We want people to know their history and to actually have that conversation so one of the benefits of the transition discussion is to actually say “What do you know about yourself? You’ve been taking this blue pill every morning for your entire life. Your parents gave it to you. You’re responsible for refilling it now which is great but what’s it for?”

Oftentimes you’ll find young adults who say “I don’t really know,” so we have that frank conversation about “Okay, this is why you’re taking it. Here’s what the side effects could be or here’s how it’s helping you. If you stopped it this is what it could potentially do to you.”

All the things that may be important when they were first diagnosed they were too young to understand or actually be interested in, they need to hear again as a teenager to understand why they’re doing what they’re doing again with invincibility concerns.

Helen Osborne: You’re just expanding this whole body of communication that really needs to happen and really making clear what an important time this is. You’re setting up a young person to be responsible for his or her own health for the rest of their lifespan. That’s wonderful.

How about ways to learn more? We may not all have a Corey right there helping us out in this transition. How can listeners, whether they are concerned as parents, providers, friends or anyone else help in this time of transition?

Cory Ellen Nourie: There are a lot of national efforts going on around healthcare transition. If you call it a problem, meaning that we have a huge population of people now who are surviving into adulthood who previously didn’t have conditions they would survive with, we are now at this crucial point to say, “Wow, we need to have the skills to be successful.”

Then we also need the adult doctors to be knowledgeable and be willing and able to accept these young adults and manage them into the adult world. Across the country there are lots of efforts underway.

There’s a great resource, The National Transition Center has a lot of resources available. We have some videos that are actually posted there that we made about trying to get young adults to understand some more medical management themselves and some legal and financial matters which we didn’t talk about yet.

HIPAA takes effect when someone turns 18 and parents who are used to having all of that knowledge, information and decision-making ability, on their child’s 18thbirthday they are no longer privy to any of that stuff.

Helen Osborne: Oh my goodness. That’s a huge wrinkle we haven’t even gotten into but our time is coming to a close. What I would love, Corey, and what I plan to do is to put some of these resources on your page of Health Literacy Out Loud so people can learn more and find some tools to help.

I know I watched one of your videos and it was terrific. I referenced it later. I was watching this teenager learn how to be responsible for her own medication for diabetes.

Corey, what a champion you are for this important time of life. Thank you so much for telling us all about it on Health Literacy Out Loud.

Cory Ellen Nourie: Absolutely. Thank you so much.

Helen Osborne: Thanks Cory.

As we just heard from Cory Nourie, it’s important to talk about healthcare with children as they transition to adulthood. That’s just one important component of health literacy. But communicating clearly like this is not always easy.

For help clearly communicating your health message, please visit my Health Literacy consulting website at www.HealthLiteracy.com. While you are there, feel free to sign up for the free monthly enewsletter, What’s New in Health Literacy Consulting.

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Did you like this podcast? Did you learn something new? If so, tell your colleagues. Tell your friends. Together let’s tell the whole world why health literacy matters.

Until next time, I’m Helen Osborne.


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