Preparing Your Child for the Transition to Adult Care

Transcription:

Caitlin Whyte (Host): Welcome back. You're listening to Children's Health Checkup, where we answer parents' most common questions about raising healthy and happy kids. I'm your host, Caitlin Whyte. Today, we're talking about your kids growing up and preparing for their transition to adult care. We'll talk about how you know when your child is ready for this change, the differences between pediatric and adult services and tips for parents going through this transition.

Joining us are our experts, Dr. Jennifer Walsh, a Pediatrician at Children's Health and an Associate Professor at UT Southwestern, as well as Dr. Jamie Becker, a Pediatric Psychologist at Children's Health and Associate Professor at UT Southwestern. Now to start us off, Dr. Becker, can you explain the concept of transitioning to adult care and why it's important for parents to help set their child up for that success?

Jamie Becker, Ph.D., ABPP (Guest): Sure I can. You know, transition to adult healthcare is a really natural, unexpected part of growing up. And for some families that means transferring the majority, if not all of their required health care tasks to prepare them to be successful adults doing it on their own. And for others, that may be more of like a co-piloting process where parents are doing a little bit of it, kids are doing a little bit of it. And they're really sharing that responsibility for their health care because they might have more complex developmental issues where we don't really expect them to stand completely on their own, but either way, most kids are able to take on at least some of the tasks related to their health care. Gradually giving them more of this responsibility is just part of growing up. So, we expect that to just happen as kids get older. So, with kids who have complex and chronic medical conditions, it's really even more important because there are lots of steps involved.

Parents are really used to worrying. And they know that one of the ways that they keep their children healthy is by being organized and staying on top of things. And parents are really good at doing that. Adolescents have a different focus. So, starting early and getting kids to recognize the things that they need to do can really help parents feel more confident that their kids will catch on. And that's a really big shift that needs to happen from kids being kids, to kids becoming adults. And that shift in maturity to being a fully independent adult and managing their medical condition requires a ton of growth, a ton of practice and a lot of skill building. Teens really need a lot of time to gain that mastery because some of that isn't as easy as it might seem on the surface.

So, for parents who've been doing this for a really long time, handing those tasks over for kids can be really hard. And for kids to pick that up and go with it on their own, can be even harder. So, the more normal the expectation is that kids need to practice and they need to grow into it and that they're going to mess it up, really makes it easier for parents to hand it over and for kids to take it on.

Host: So, Dr. Walsh, can you explain the differences between pediatric and adult health care systems and what to expect as families make that move from pediatric to adult care?

Jennifer Walsh, MD (Guest): So, the first thing is that the adult health system does not have as many supportive resources to help patients and families navigate the system. And there's certainly more of an expectation that patients will manage their conditions independently and they also need to advocate more for themselves. The standard model in adult healthcare is that the patient speaks directly to the provider and that they know their history and their medications and all of that. And many providers will invite parent participation, but will require at least part of the visit to be done independently. And, you know, part of that is that they're trying to maintain appropriate confidentiality and certainly adult topics, things like sexual history, alcohol, drugs are more often part of a typical visit.

And they want to make sure that there's a space to talk about that, privately. And there are also certain rules around confidentiality and even being able to share information with someone other than an adult patient. And the default is really that no information is shared with anyone except the patient, unless there is explicit permission. And that includes making appointments and providing access to test results. In the adult world, missed appointments are typically the responsibility of the patient. You're not necessarily going to be called to reschedule. And there is a lot less care coordination, social work and nursing support available.

And so providers and families are often navigating more of that on their own. I think the other piece that's important to know is that adult health care coverage does not offer the same type of coverage for supportive therapies, like home nursing, physical therapy, occupational therapy, medical equipment. And so what is available through insurance may not be the same as on the pediatric side. From the provider standpoint, you know, while adult primary care providers may not be as familiar with certain pediatric onset special healthcare needs, and they really have to dedicate time to reading and learning more about them. They do tend to be very accustomed to managing patients with complex illnesses, multiple problems, therapies, and medications. An adult primary care provider may feel very comfortable managing conditions like hypertension and diabetes that are often cared for by specialists in the pediatric world, that are managed completely by primary providers in the adult world.

It's also important to know that certain subspecialty support for pediatric conditions, things like certain developmental or metabolic conditions, for example, may also be much more difficult to access in adult care. So, it just may take several visits with an adult provider for them to get to know a patient with complex pediatric onset conditions.

Host: So then Dr. Becker, at what age should parents start preparing their child? What are the stages of this transition?

Dr. Becker: That's actually a really good question and not actually as simple as it may seem. So, the American Academy of Pediatrics actually recommends that a formal transition plan start at the age of 14. So, that might mean discussing things like changing providers around the age of 18 or right around high school graduation, and starting to think about the really specific tasks that need to happen before that transfer occurs from provider to provider. But there are actually some things that can be done earlier, really, as you think your child is ready. So, think about like when you taught your child to swallow pills. For some kids that happened as early as 18 months or two years old, or three years old. And for other kids that happened much later because they weren't really ready to start it until six or seven or eight. And so really, it just depends on your child and their personality and their temperament, but things like answering your doctor's questions directly, that might come really early to some children and really late to other children.

These are both tasks that actually happen very naturally in the transition journey. And there are little things that can happen along the way that happen at the discretion of that parent child relationship and the relationship with their doctor. But there are a lot of milestone tasks that need to happen in that developmental journey in order for transfer to happen really effectively. So, some of those things might include understanding of their disease and how you take your medication effectively, how you provide a basic history to a provider, knowing your surgical history, knowing what's happened with your health care, how do you make an appointment? How do you request refills from a pharmacy?

What's your insurance? How do you present an insurance card? Do you know what it means to have insurance? Understanding what your insurance coverage is at around 18 or 19 and why it's so important to keep your insurance coverage, knowing what that plan means post high school. Knowing who your healthcare providers are and what the difference is between your primary care provider and what a specialist is. Knowing which specialists take care of, what parts of your complex medical condition, being able to administer your medication independently is only part of that transition process.

And then there are a lot of little things that go along with that, that are also part of that journey. So, every little step of that are things that parents and kids can work together with their medical team to start preparing for that transition and that transfer.

Host: And with 14 being that general age to start, Dr. Walsh, how will I know if my child is ready then for the transition to adult care?

Dr. Walsh: Yeah. So, even in a perfect world, it may never feel like your child is ready and it will likely always feel like a little bit of weight. There may also come a time when it doesn't matter if your child is ready, because the reality is that our healthcare system will dictate their transfer based on policy or insurance requirements.

So, I think a better question might be how do we get teens to be engaged in becoming more independent? And your child might demonstrate a desire to have more control of their daily tasks related to their medication, or ask about things related to their healthcare. So, when they demonstrate interest, allow them to explore and really encourage that. Even if you think that they're not a hundred percent ready, it's really helpful to start entrusting them with more and more responsibility. Getting them on board with transition requires giving them a little bit of trust and a little bit of space and sometimes even a little bit of room to fail so that they can succeed when they need to do it on their own.

I think one of the things that's helpful is to think about shifting from being the driver in charge to the consultant and the advisor in the passenger seat. And what would it take to help your child shift into truly being the driver and you just being there as a support.

Host: So, Dr. Becker, what tips do you have for parents on how to prepare children for this transition?

Dr. Becker: Great question and much like Dr. Walsh was saying about that shift from driver to passenger, it's a lot like teaching your children how to drive. First, they have to do a little bit of homework and they need to learn all the steps that it takes to do the thing that you're asking them to do. And then they need to practice it a lot, with supervision. And then eventually you need to peel back that supervision and give them that scary amount of trust that it takes for them to go out and do that by themselves. So, if we break that down and look at what that actually means in practice, the first step of that is really observation. You know, let them see what you do to take care of your health.

If you have a medical visit coming up, let them go see what it means to go and talk to your doctor. Let them see how you interact in an adult health care setting and how you talk about your healthcare. If you're someone that takes medication, let your child watch you take pills. Let them see you taking care of your health and interacting with your healthcare specialists. Let them see you filling medication at the pharmacy. Take on a see one do one observation and then have them take it on. Let them call the pharmacy and order the medication. Let them talk to the insurance companies, let them observe you do it. Then watch them do it and then kind of let them take the driver seat and let them do it with you kind of pushing them to do it a little bit more effectively. And then the hard part comes, where you as a parent have to kind of sit back and let them do it and they're very messy and hopefully they get better and better at it. Because the next step in all of this is just to practice, practice, and the goal in that is really that if you start small and give them small manageable tasks, they get really set up for success because if they do one small thing and they do it really well they are more likely to go back and do more. So, things that you can do, early on in your child's health care to kind of set yourself up to be successful at this, ask your clinics really early on what is the transition policy?

And do you have specific adult providers that you recommend? We all know that it's not easy to get into the doctors that you want to sometimes, and sometimes there are wait-lists. So it might be helpful to start making those calls early. If you promote directed conversation with your provider and you as a parent are offering to step out so that your child starts developing the skills to talk to your doctor directly, then you are supporting them in actually having these conversations, even if they start out being uncomfortable and quiet and really awkward. By showing your child that you have faith in them, by stepping out of it, you are actually supporting that journey. And then what kind of specific materials or resources are available for transition within the disease that your child has?

There might be things that are already out there and that you guys don't have to reinvent the wheel or your clinic doesn't reinvent the wheel because they already exist. So, if you go and seek it and you support it, there are things that are already there that are available to help prepare your child for that transition.

Host: And as we wrap up here, Dr. Walsh tell us about the services that Children's Health offers to help patients and their families work through this transition.

Dr. Walsh: Children's Health offers a number of services and programs to help patients and families with the transition to adult care. These services may be integrated into your clinic visits. You may notice healthcare teams beginning to talk about the transition to adult care during those routine visits and starting to work with you to develop a transition plan. This plan can include things like building skills to care for medical conditions and navigate adult care, determining who will be involved in making medical decisions in the future, ensuring access to insurance and ways to pay for care, finding new adult doctors and eventually moving to these new adult doctors.

Children's Health also has a dedicated Office of Patient Transition responsible for programming in supporting the medical teams around the transition to adult healthcare. There are certain programs that this office runs. Every fall Children's Health has transition workshops either in person or virtually. And these workshops cover broad topics, such as what to expect when you move to adult care, health insurance, and supplemental security income, attaining guardianship, or power of attorney and future planning for school or work. Some of the individual clinics offer transition classes throughout the year for specific conditions or diagnoses.

You can ask your healthcare team about transition workshops and classes, and then look for events on the children's.com transition website. And all of the parent and patient education and resources are available at children's.com. So, you can just search on the webpage for transitioning to adult care for a full list of available documents from the Office of Patient Transition.

Host: Wonderful. And Dr. Becker, do you have any other advice or resources to share?

Dr. Becker: The message that we really want to drive home is that this process can really seem overwhelming, but it's super important not to lose sight of the fact that this is really a positive and normative step in teens' lives. And this is what it really means to move to a healthy, independent adulthood. And in a lot of ways, we view it as a graduation of sorts. It's a step that should be celebrated and approached from an empowered framework and attitude. And it means that you are growing into a level of maturity and expected growth, that just means moving on into the next stage of one's life. And the truth is that you can do this as a parent. Your child can do this as a patient. And we here at Children's Health have got your back.

Host: Well Dr. Walsh and Dr. Becker, thank you so much for joining us today and sharing your expertise and thank you, of course, for listening to this episode of Children's Health Checkup. If you found this podcast helpful, please rate and review it and share the episode and please follow Children's Health on all your social channels. We'll see you next time.