Abby (00:38)

Welcome everyone. Thank you for joining us for our presentation on youth perspectives on medication management. I’m Abby Bohannon. live in Keene and I have been on the council since July of 2020. And here’s Keri Brand to introduce herself.

Keri (00:56)

Hi, I’m Keri Brand. I am the Resource and Program Support Specialist at New Hampshire Family Voices,

Abby (01:04)

Today’s presentation is a collaboration between New Hampshire Family Voices, PIC, and the Yeah Council. Here’s CJ to tell you little bit more about Yeah.

CJ (01:15)

Hello, I’m CJ. I’ve been on the YEAH council since November 2019. YEAH stands for Youth for Education Advocacy and Healthcare Council. It’s a youth led group for people ages 14 to 26 with disabilities and other healthcare needs of all kinds. ‚ Inclusive and supportive, our focus is for advocacy and empowerment of youth in healthcare and education both.

Abby (01:44)

PIC and New Hampshire Family Voices gives Granite State families and those who work with them the resources, training, and information they need to help the children in their care to learn and thrive. New Hampshire Family Voices is more health focused and PIC is more education focused.

Keri (02:04)

Thanks, Abby. And we could go on and on about what PIC and New Hampshire Family Voices do.  But for tonight, we’re going to keep it a little bit short and sweet and just say that if you ever have needs in the education or health care realm, just give us a call and we’ll try to guide you as best we can. New Hampshire Family Voices has a library of all kinds of books that are hard to find on health care needs that you can check out online.

and we do a lot of different kinds of projects, one of which is transition and the YEAH council is part of that project.

Abby (02:44)

One of the things that New Hampshire Family Voices does is support youth with the health care transition process. YEAH works in collaboration with New Hampshire Family Voices to do this. Health care transition is when the youth takes on more and more responsibility to manage their own health. Youth need to learn certain skills in order to do this.

Keri (03:11)

One of those skills is medication management, which this presentation is about And CJ is going to tell us a little bit about what you will learn.

CJ (03:22)

So firstly, why managing your medications is important, what skills you need in order to manage your medications, what challenges there are, some strategies based on our and other youth experience, and some of the tools and resources available for support.

Keri (03:47)

Thanks CJ.

Abby (03:50)

So why learn how to manage medications? As a group, we identified several reasons for learning how to manage medications. All of these can apply to a youth who may not be fully managing meds on their own at any point in their life. It is still great to understand as much as you can about your medications, so managing medications can look different for different people and different families.

For some, it could be that they can recognize the difference between the way their morning pills look and how their nighttime pills look. Skills can range all the way up to managing all aspects of managing medication independently. For those who will be independent in managing their medication, they may attend their doctor appointments independently just to discuss their meds.

Keri (04:46)

Thanks Abby. Next we’re going to hear from three of our YEAH members about their own personal experiences managing medications. So first up we have Emma Wheeler.

Emma (05:00)

I’m Emma Wheeler and I’ve been on the council since February, 2023. When I started managing my medications, it took a while, like a couple of months, but I started using a pill organizer and I put, a notification on my phone for when to take my medication or an alarm on my phone.

And then I would put my medication right by the pill organizer so I knew when to fill it or I would talk with my parents about when to fill it. Because I had to use them for a while and then I was able to refill it at the same place or at the same time. I got through those steps, I got used to it.

Keri (05:41)

So awesome, Emma. wonder if, you willing to share with us where you keep it? That makes it easiest for you.

Emma (05:50)

keep it in the kitchen, the counter right by the door to the garage. So then it’s right by my medication and all the medication that a lot of people in the house take. So I know exactly where it is.

Keri (06:02)

So you all have like a central medication spot in the house.

Emma (06:07)

Yes, pretty much.

Keri (06:11)

Great, thank you so much for sharing with us, Emma.

Next up we have CJ telling us about her experience and some of the strategies that she used.

CJ (06:25)

Yeah, so I am basically independent with my medication management at this point. It took a while to get there. I started learning how to fill prescriptions when I was 17, 18. And I did that by convincing my parents to walk me through every single step and then watch me do it so that I made sure I wasn’t messing it up because I was very nervous, but I did get used to that part. and more recently, after I’ve moved out, I’ve had to learn how to pick up controlled medications so I don’t have my parents right there to ask, but I did basically interrogate the doctor about, like what I need to bring to the pharmacy, what’s going to be different. what like habits I should have with taking care of a controlled medication.

And I can now do that independently as well. Generally, the most important thing in medication management is learning how to ask questions so that you can learn how to deal with new types of medication because we’re going to have health all our life, whether it’s good or bad, and we’re to have to be doing things to upkeep it.

So we should also be learning about how to upkeep it, including through medication for our whole life. There’s going to be more technological advancements, more things that we’re going to do just as we need more types of meds it’s best to be adaptable and know how to do new things rather than stick to one and really drill in that.

Keri (08:12)

Thanks CJ, can I ask you a question? This skill of asking all of these questions and what you said, like interrogating your doctor, how did you learn how to do that?

CJ (08:15)

Yeah.

A lot of that was also watching my parents. I have always been in all of my appointments with my parents. So I’d watch them and my parents would try to talk to me about it and include me in the conversation even from when I was like 11 or 12 But it’s also important to know that you can go back and ask more questions if you forget some.

which happens a lot. You can talk to your doctor a lot of times by patient portal. Hopefully you can talk to or call or text your parents or another adult that you trust. And you can also always call the pharmacy and the pharmacist will be able to answer a lot of questions.

So trying to think about it a little bit ahead of time. And then once you have the medication, you might also have to think about it a little bit afterwards, just so that you make sure you know what’s happening and you have a, you’re confident in your understanding.

Keri (09:46)

It’s not just you. You don’t only get one shot at it. It’s a continuous process. So yes. Yeah to learn how to pick up the phone. Or at least get someone to pick up the phone for you.

Keri (10:02)

Great, thank you. Next, we’re gonna hear from Abby about her experience.

Abby (10:08)

When I was younger, I had liquid medications via my feeding tube and now I take all of my medicines by mouth and pill form I learned how to swallow pills with my OT efforts by swallowing Tic Tacs at first one Tic Tac and then a couple at a time and up from there. Keeping a medication chart is vital for knowing the type of medication, your dosage and the reason you take your medication and the name of the medication.

especially when you’re on multiple medications and supplements like I am. The state provides me with Medicaid, but my primary insurance is through my dad. So the pharmacy has to run both insurances through this system to ensure I don’t have a co-pay. Sometimes I forget to put it through both, and then my mom has to remind me, that I have two insurances and I’m working on eventually doing that myself.

Keri (11:05)

That’s great. Abby, I wanted to ask if you remember learning to swallow pills. Yeah. was, can you share with us, like, did you have any fear around that or uncertainty or like, what was that like? Because I think a lot of people struggle with that.

Abby (11:26)

From going to liquid to pills, didn’t want to, but one of the medications that I needed, had to be pill form, so I had to transition. And so then we worked with my OT to help me conquer taking pills.

Keri (11:48)

So yeah, again, really what CJ said about finding the right support. So you don’t have to build these skills on your own or families don’t have to feel like they can’t ask for support in building these skills.

And Abby, is there anything else you want to share with us about the challenges of multiple medications? Because I know that that has its own unique.

Abby (12:14)

making sure that you refill them on time and they all have a different refill schedule. So having to manage all the refills and making sure they have you have medication.

Keri (12:30)

Yes, that makes a lot of sense because they don’t all get filled at the same time necessarily if you started them at different times and then that can quickly get to be a lot.

Abby (12:41)

And if you take supplements, sometimes you have to get them from Amazon or a different store. So you have to plan on getting those.

Keri (12:51)

Yeah, so I feel like we’re already hearing a lot of kind of recurring themes like plan ahead and try to think ahead for medications management as one of the things and getting support and using the tools.

So next we’re going to hear from Keagan about a survey that we did. And the YEAH Council put together a youth survey just to try to get some more perspectives on medication management because we are a smaller group and we wanted to hear from other youth as well. So YEAH Council members did take this survey, but we also reached out to other youth to try to gather.

some additional responses so we could represent a wider perspective. And Keagan is going to tell us all about the survey results and questions too,

Keagan (13:46)

I’m Keagan. I’ve been on the Council for a few years.  With their survey participants were asked, what motivated you to work on managing medications because There has to be a reason for someone to want to manage their own medications because self-motivation or extrinsic motivation is a powerful tool. What were some challenges with learning to manage medications? What strategies worked for you? What tips do you have for managing medications that worked well or maybe didn’t work so well for others.

CJ (14:33)

Yeah, so our first question was what motivated you to work on managing medications? There was basically three answers. The first one is that they’re necessary for independence. We had four respondents. Just as people get older and you want to leave the house or even you just want to have more control of your life within the house. Part of that is keeping track of your meds.

You can’t be as independent if you have someone watching over that particular part and doing all of it for you.

Also, the want to improve symptoms, things like forgetting your medication or just feeling bad and wanting to start a medication are definitely strong motivators for feeling better. We also had a couple other responses.  One person said that they weren’t really motivated. They just got that checklist from the doctor and they’re like, okay, I guess I’ll do that, which Fair enough.

Keri (15:48)

And I really think that one’s important because sometimes on the professional side of things, we might not know if what we’re putting out there gets across or gets through. So it’s kind cool to have someone respond and say, it was on the checklist. So it actually is sort of creates some, validation for trying to keep putting these things out there and make them available for people who work with youth. So you never know. You just never know what impact something is going to have.

Keagan (16:23)

All right, so some of the common challenges was remembering to take them.  I’m ignoring timers and reminders because you just want to feel normal. Once you start taking medication, it’s hard to continue. It’s another response was it’s hard, especially when you’re first learning to take your medications, to get your doctor to understand that no, I’m having a reaction to this and I’m not being just not willing to take my medication. Also, your diagnoses can also play an important part in energy medication with fatigue, dexterity, things like ADHD.

Keri (17:21)

Yeah, I think that’s something I just want to comment on that that I think is so important to get the youth responses because and perspective because that part where people were sharing about the diagnosis itself or the condition they have itself making it hard to take the medication is maybe something that not everyone would come up with on their own without the youth sharing that.

CJ (17:46)

So our third question is, what strategies have worked for you with managing medication so far? Again, we had about three responses. Six people said that best thing was getting help from parents or doctors, having parents or doctors supervise, answer questions, working around the problems that you have with help from other people is a really big factor. Routine is also big. We had five people who said just routine, remembering to take it at the same time, linking it to a daily activity will help with that big problem of memory. And alarms are also on that same note where having a timer will help you remember to take the medicine.

Keri (18:46)

And I think it’s interesting too, to think about putting as many strategies in front of people as possible because for example, like in my house, we tried alarms and that just didn’t work very well because the alarm would go off and we would ignore the alarm and say, we’re gonna do it in a minute and then forget about it. So, for my crew, the routine works better. But for other people,

who are, you know, it just depends like what works best for you. So alarms work best for other people because it might, you know, be like, okay, the alarm goes off, I take it. So in a way it creates its own routine. But I just think it’s good to have like choices.

Keagan (19:33)

These are the strategies that the youth have for other youth who are allowing to take their medications. I think the first one is kind of funny. I value all the responses, but the giving you a better trait every time you take your medications to remind you to take it. If you’re experiencing symptoms that you haven’t talked to your doctor about in a while, you know, reach out to them, say, hey, I’m having X symptom. Is it a side effect? They might be able to help you.

Also, if you’re having a hard time remembering your medication, try to think of why is it your diagnosis? Is it something else? The main thing, you know, organization and calendars and pill counters work, but really the main thing I want to say with like the talk to your doctor one is please don’t

just stop taking your medication cold turkey.  If you do that, most medications you get very, very sick, especially you’ve been taking it for a long time. So that one is really important to me. All right, whenever you’re ready, Kerry.

Keri (21:03)

Okay, think we have some more tips coming up. had we got a lot of feedback on the tips and strategies question.

CJ (21:11)

Yes, the kind of cliche, listen to your elders. You don’t want to hear that as a youth, but people who are older than you have also been having to remember things for longer than you and also having to organize things for longer than you. So you can just steal what they know and skip the whole middle part, which is great.

Writing things down for reference so that you don’t have to remember. You can just look at what you wrote down. Remembering to think ahead, for example, refills. You don’t want to get down to your last pill and be like, hi, I should probably call the pharmacy. You want to do that like a week in advance, especially if it’s one that occasionally there are shortages of, for example, a lot of ADHD medicines or maybe just one. I don’t take it, but I’ve heard it.

Also having a good daily routine around medication taking. And in general, being patient, realizing that the first thing you do probably is not going to work unless you know yourself really well. But keep trying different things and different things work for different people. You’ll get there eventually.

Keri (22:31)

So managing medications independently can seem overwhelming, but hopefully it’s encouraging to see that youth had so much feedback to offer with their tips and their strategies.  And really managing medications is a milestone that’s made up of a lot of different skills. So it is a larger, you could consider it like, it’s a skill, but really it’s…

It’s a, I like to consider it more of a milestone made about a lot of different skills so we can break it down a little bit. And, you know, we can think about all these different little skills like being able to open a childproof container, being able to swallow pills, and Abby’s going to share with us some more of these sort of sub skills of medication management.

Abby (23:24)

Make sure you know the names of the medications you take, why you take them, and how often you take them. Having a medication sheet will help you with this. And be able to read a prescription label and follow the instructions. Know about your medications and understand how they affect you and what side effects they have, including mood changes or whatever.

Take your medications on a schedule. For some, the goal is to do this without supervision and without reminders. Make sure you know how to get your medications refilled. Know if you have to get it picked up or get it by mail. Request refills by phone or online and be able to order through the patient portal.

Keri (24:20)

So really you as a youth can learn these things one at a time, or you as a family member or a professional can teach these things one at a time. So in the end, they all add up to maybe the whole picture of managing medications independently, but it helps just to consider like, okay, we’re gonna walk before we run.

Abby (24:49)

Here are some additional skills. Also make sure that you understand your prescription coverage, your primary and secondary insurance, the specific requirements for ordering meds, having to, knowing which one to bill or if they both need to go through. That’s a high level skill.

that may come in later in the process of building skills. It’s also important to know how to ask questions about your medications. And for medication safety, it’s important to know how to store your medications, the interactions, and the correct dosage. And to take only your medication and not one of your family members. And to know how to dispose of unwanted medication, like going to the police department to dispose of them.

Keri (25:50)

Yeah, that’s a good one. If you’re, for those who try different medications, you might end up with some that you don’t want to keep them all in the house. And I feel like the medication safety in particular is one you can start really, really early and really young. I’ve seen curriculums for elementary school kids on that.

Yeah, this is a kind of a model for building skills that caregivers, family members, professionals can use with youth who are building these skills. And it’s called the I do, we do, you do model. And really it’s just the I do part is the family member or professional or caregiver demonstrating

how to do it. Let’s say you’re learning to use a pill box. This could be like the, you know, whoever is the teacher here filling the weekly pill box in front of the youth. Then the we do is doing it together, kind of providing assistance, maybe double checking it if the youth are doing it, kind of working on the skill as a team. And then the you do is the independent practice part.

where let’s say in this example, the youth fills the pill box on their own. They don’t need to have it double checked and then they’re able to use it for the week. So you can kind of use this model for a lot of the different skills. I feel like CJ’s example kind of fits into this really well too, where CJ was learning how to ask questions at the doctor’s office, kind of like, okay, first you watch your family member do it.

then you do it together. So maybe they fill in the questions that you forget or kind of remind you what questions you want to ask. And then finally, you’re at a point where you might even be able to handle the whole thing on your own without your family members even in the room. And you can adapt this depending on what it is you want the you do to look like.

CJ (27:57)

It might be you write all the questions that you have down for the appointment before you get there. Instead of you ask them at the appointment, you prepare them for the appointment yourself so that you have more time and less stress.

Keri (28:12)

I like that.

Do any members want to add anything? think a lot of, there was a lot of mention on learning some of these skills from a family member, which is really encouraging to see, because I know as a caregiver or a parent or a professional, know if you are having that impact.

So that was kind of nice to see. Abby, do you wanna?

Abby (28:45)

Yeah,and the I do, we do, and you do also can relate to different other skills categories of skills like independent living skills and adulting.

Keri (28:58)

Yeah, it’s really useful for a lot of the transition skill building.

So success is going to look different for everybody.  But just know that it’s a process and your vision of success might change as you get older, as you learn more skills. You might be ready to have success look different. And so it’s this continuous process.