The Burden of School-Related Concerns with Dr. Mia Chandler

For kids managing a rheumatic disease, school can be a frustrating cycle of missed lessons and makeup work. While a 504 Plan for special accommodations can certainly help, families living with pediatric rheumatic diseases know that school-related challenges are inevitable.

There is very little evidence about the burden of school-related issues and the exact barriers that kids with pediatric rheumatic diseases face. 

Mia Chandler, M.D, M.P.H, a pediatric rheumatologist at Boston Children’s Hospital, aims to change that. Last year, Dr. Chandler won a CARRA-Arthritis Foundation Career Development Award to support her research into Juvenile Idiopathic Arthritis and School-Related Concerns. Her research will assess the burden of school-related concerns – beyond physical and academic challenges to include social and psychological issues.

Learn more about her important research and the challenges that kids face at school in this special episode of the CARRA Podcast.

Transcript

The Burden of School-Related Concerns with Dr. Mia Chandler

Claudette Johnson: [00:00:00] I like school just about as much as possible for an overworked junior. Getting bagels and chai lattes with friends during lunch, my teachers in classes, playing badminton in gym, and going to clubs just for the free food. But like any kid managing rheumatic disease, School can also feel like an exhausting and frustrating cycle of missed lessons and makeup work. Always watching that number of absences climb higher and higher.

And while there are things that help, like good principles and understanding teachers, and even a 504 plan for accommodations, at the end of the day, it's Just like everything else with your disease, it's on you. But here's the good news, you are definitely not alone. On this episode, we're focusing on school, understanding the barriers we all face, and the resources that can help.

I'm your host, Claudia Johnson, and this is the CARRA Podcast.[00:01:00] 

Claudette Johnson: So, even with well-meaning schools, why is this so hard? And what are those tools and tips that might make navigating school with a rare pediatric disease a little easier? We turn to Dr. Mia Chandler. Dr. Chandler is part of the Rheumatology Program at Boston Children's Hospital, and she is currently researching the challenges that pediatric patients and their families face when it comes to school.

Claudette Johnson: Dr. Chandler, thank you so much for joining us. I'm happy to be here. Let's talk about your research a little bit. Okay. I understand that you're digging into the barriers at school that get in the way of keeping students with arthritis on track, in class, and succeeding. Can you tell us a bit about that? 

Dr. Mia Chandler: So, there's very little evidence, at least based in the United States, about, [00:02:00] one, the burden of school related issues. I'm much less about the exact barriers that are, that, that kids face. So, the first part of my research is to really assess in, in our local center, what the exact burden of school related concerns are. The nature of concerns may be much beyond the physical, you know, school is a place where it's just not about academic engagement, but it's where we have our social engagement and social development. And there are maybe even some emotional factors that play into the barriers for achieving. All of the benefits of being in school beyond the difficulties with writing that some may have, or the difficulties with walking from class to class or participating in, in physical education, there could be these psychological issues that come [00:03:00] from maybe not being able to participate as, as fully as other peers.

Dr. Mia Chandler: So, this is part of what my own interview process is going to be and engaging patients with JIA, their parents and school officials to tease this out a bit. 

Claudette Johnson: So, you're studying both physical and psychological barriers? 

Dr. Mia Chandler: Any type of barrier. As a qualitative portion of this research, I know that barriers go beyond the physical. So psychological, emotional, social, cognitive, even there are certain therapies that for different people may or may not even have an effect on cognition. So, like how well someone is able to concentrate, you can imagine somebody on steroids, if they have to be on high dose steroids for any measure of time, that [00:04:00] can, not always, but it can affect a child's ability to, to concentrate. 

Claudette Johnson: What about the barriers that schools themselves put up, whether they intend to or not? 

Dr. Mia Chandler: Yeah, I certainly want to investigate what, what those are. So the first thing that comes to mind as a possibility is even awareness of, you know, the prevalence of JIA or juvenile idiopathic arthritis. Sometimes kids don't look as sick as they are, and you can imagine, you know, if kids are asking for passes to take the elevator or a needing to modify physical education or to have preferential seating, whatever it is, there could be bias for or against accommodating these concerns based on many factors. We just don't know. We don't know exactly what they are just [00:05:00] yet. 

Claudette Johnson: Would you consider these barriers to be unique to kids with arthritis? Or do you think that they can also be faced by kids with other diseases in our care community? 

Dr. Mia Chandler: I certainly think it could be faced by, and I know it can, and you know, anecdotally with the connective tissue diseases that we see like juvenile dermatomyositis and lupus and scleroderma and such, sure these kids  have challenges.

Dr. Mia Chandler: The reason why I chose to focus in on JIA is because collectively, it’s the most common disease that we see. So, it would be much more feasible to recruit people to offer interviews in this disease category. 

Claudette Johnson: Something that I want to touch back on is that for those kids with diseases, could you go into more detail regarding that and handling school? When you don't, even if you're sick, you might not look at that. [00:06:00]

Dr. Mia Chandler: Yeah, so I think about perhaps the child who has only a few joints affected, perhaps the joints don't look dramatically swollen, but they hurt a lot. Or maybe stiffness is more of a problem rather than swelling. So they're moving slower in the morning and then not able to, to concentrate as well. I think that could get maybe confused for other behavioral factors and I don't want to give too much away just in case there are people who are listening to this podcast who may be recruited to, to offer interviews on their own experiences. But, you know, I imagine that there could be challenges and thinking that the behavior is coming from something else rather than the JIA, and I worry about stigma.

Claudette Johnson: A lot of parents listening here. What are some action items for when it comes to helping overcome barriers at their [00:07:00] child's school?

Dr. Mia Chandler: I think it's important to be aware of the rights around accommodation. So, there's something called the 504 Plan, which allows kids to have access to reasonable accommodations for those to be requested so that kids can participate as fully as possible in school.

So, parents should be aware that this is an option for them, and they can coordinate with their rheumatology team and even their primary care provider to get a letter drafted so that it can be sent to the school administration, school nurse, and teachers to be aware for any accommodations that might be needed.

Dr. Mia Chandler: Perhaps it could be things like having two sets of books, one to be kept at school, one to be kept at home, trying to make sure when possible that classes are kept closer together. It could be a modified physical education plan or having assistive [00:08:00] devices for typing or speaking or dictating essays. Those, those type things. 

Claudette Johnson: It seems a 504 plan is only really effective if the teachers and administrators really step in to help. 

Dr. Mia Chandler: Yes, yes, and there may even be barriers to how much they could do. So, although it's part of a federal law that reasonable accommodations must be made, especially for those who are in public schools, so receiving some federal funds, there's not money tied to this mandate. So, one may imagine in a low resourced school setting, certain accommodations may be technically and economically difficult. 

Claudette Johnson: Knowing what you know, what are ways to make this all better that you would love to see and may have seen anyone doing so far? 

Dr. Mia Chandler: Yeah, so the fundamental thing that is [00:09:00] open communication between medical provider, parent, patient, and the school officials. So, the more that everyone is educated about what home life is like, what school life is like, and what the, the medical team has in mind as far as goals, I think that's the starting point. Building relationships around communication. And I say this as the fundamental because there's probably no one size fits all for accommodations and access, especially since schools are funded based on the district that someone lives in and the culture of the school, the priorities of the school and the school district may, may vary by state and even by neighborhood.

Claudette Johnson: Would you consider their power to be in a coordinated approach? Parents, patients, schools, and doctors working together to improve JIA kids outcomes? [00:10:00] 

Dr. Mia Chandler: Yes, I do, especially school related outcomes. So, one of the things that I noticed is juvenile arthritis of any sort seems to be underappreciated on a national discourse level. It would be great if there were opportunities for advocacy such that awareness is raised at the level of the departments of, of education so that it's mentioned in policy. And in training for school nurses that even at the level of the CDC, it is listed much like diabetes is on the website as something to be considered for awareness, because although, you know, it's touted as a rare disease, the prevalence is about equal to the prevalence of type one diabetes in children in the United States.

Dr. Mia Chandler: So yes, I think the coordinated effort on just raising awareness across all facets of [00:11:00] our society is my goal, but I'm totally biased about that. 

Claudette Johnson: As are we. Is there a final thought you would like to leave with parents and children with rheumatic diseases and difficulty keeping things on track at school?

Dr. Mia Chandler: Yeah, just I would say it's important. Just to vocalize concerns to care provider team and with teachers, open communication is, is very important. 

Claudette Johnson: Thank you, Dr. Chandler for joining us.

Dr. Mia Chandler:My pleasure. Thank you. Thank you for having me.

Claudette Johnson: CARRA is the Childhood Arthritis and Rheumatology Research Alliance. We are doctors, researchers, and patients all working together to prevent, treat, and cure pediatric rheumatic disease. And we want to hear from you. If you have a topic for an upcoming episode, head over to our podcast page on the CARRA website, and leave us a [00:12:00] message through our Speak Pipe link. We might play your voice on a future show, and we'll do our best to answer your questions.

Finally, we encourage you to share the CARRA podcast with friends, patients, and anyone else interested in learning more about the incredible work of the CARA community, dedicated to creating a world free of limitations for children with rheumatic disease. This episode was produced and edited by Mason Lipman.

Our music is by Jonathan M. Horner. Thank you for listening.