Families living with a pediatric rheumatic disease know that school can be a frustrating cycle of missed lessons and makeup work. However, there is very little evidence in medical literature about the burden of school-related issues and the exact barriers that kids with pediatric rheumatic diseases face at school.
Mia Chandler, M.D, M.P.H, a pediatric rheumatologist at Boston Children’s Hospital, is working 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.
Dr. Chandler explains more about her important research in this episode of the CARRA Podcast. Check out these highlights from her conversation with podcast host Claudette Johnson.
Claudette Johnson: 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 the burden of school-related issues, and much less about the exact barriers that our kids face. So, the first part of my research is to really assess in, our local center, what the exact burden of school related concerns are.
The nature of concerns may be much beyond the physical because school is a place where it’s just not just about academic engagement, but it’s also where we have our social engagement and social development. There are maybe even some emotional factors that play into the barriers. Beyond the difficulties with writing that some may have or the difficulties with walking from class to class or participating in physical education, there could be psychological issues that come from maybe not being able to participate as fully as their peers.
My interview process will involve engaging patients with JIA, their parents, and school officials to tease this out and learn more.
Claudette Johnson: What about the barriers that schools themselves put up, whether they intend to or not?
Dr. Mia Chandler: I certainly want to investigate what those are. So, the first thing that comes to mind as a possibility is even awareness of the prevalence of JIA or juvenile idiopathic arthritis. Sometimes kids don’t look as sick as they are, and you can imagine that 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 don’t know exactly what they are just 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 these barriers could be faced by kids with other diseases. We know anecdotally that kids we see who have connective tissue diseases such as juvenile dermatomyositis and lupus and scleroderma, have similar challenges.
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 for interviews in this disease category.
Claudette Johnson: For those kids with diseases where you might not look at that sick even if you are sick, could you go into more detail about handling school?
Dr. Mia Chandler: Sometimes a child might have only a few joints affected or perhaps the joints don’t look dramatically swollen, but they hurt a lot. Or, maybe stiffness is more of a problem than swelling. So, they’re moving slower in the morning and then maybe they are not able to concentrate as well. I think that could get maybe confused for other behavioral factors. I imagine that there could be challenges when it comes to people thinking that the behavior is coming from something else rather than the JIA, and I worry about stigma.
Claudette Johnson: What are some action items for when it comes to helping overcome barriers at their 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 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, so that the school nurse and teachers can be made aware of any accommodations that might be needed.
It could be things like having two sets of books, one to be kept at school, one to be kept at home. It could be trying to make sure when possible that classes are kept closer together. It could be a modified physical education plan or having assistive devices for typing or dictating essays.
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, 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, 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: Yes, so the fundamental thing is open communication between medical provider, parent, patient, and the school officials. The more that everyone is educated about what home life is like, what school life is like, and what medical team has in mind as far as goals, I think that’s the best starting point.
This is 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. Also, the priorities of the school and the school district may vary by state and even by neighborhood.
Claudette Johnson: Would you consider their power to be in a coordinated approach of parents, patients, schools, and doctors working together to improve JIA kids’ outcomes?
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 so that awareness could be raised at the level of the departments of education so that it’s mentioned in policy and in training for school nurses. Even though it’s touted as a rare disease, the prevalence juvenile arthritis is about equal to the prevalence of type one diabetes in children in the United States.
Claudette Johnson: 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: I would just say that it’s important to vocalize concerns to your care provider team and to your teachers because open communication is very important.
This episode was edited by Mason Lippman.
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About Mia Chandler, M.D., M.P.H.
Dr. Chandler is an Attending Physician in the Rheumatology Program at Boston Children’s Hospital and an Instructor of Pediatrics at Harvard Medical School. She completed her Pediatric Rheumatology Clinical Fellowship in the Division of Immunology at Boston Children’s Hospital and Harvard Medical School, and she earned her medical degree from the Medical University of South Carolina’s College of Medicine.
Dr. Chandler is very interested in health policy analysis and development aimed at impacting quality of life for children and families managing chronic disease. In 2023, she won a CARRA-Arthritis Foundation Career Development Award to support her research into Juvenile Idiopathic Arthritis and School-Related Concerns. In 2017, she was the recipient of the “Dedication to Family Centered Care Award” – Baystate Medical Center, UMASS, in recognition for dedication to the social and emotional needs of patients.
About Claudette Johnson
Claudette is a Junior at Montclair High School in Montclair, New Jersey. She was diagnosed with Localized Scleroderma at age nine. She enjoys playing piano, reading and competitive diving. Claudette is also an incredible advocate and innovator. She is the host of The CARRA podcast, and she created an award-winning video called “The Land of Rare Disease.”
About Mason Lippman
Mason is a Sophomore at Montclair High School in Montclair, New Jersey. He was diagnosed with more than a dozen anaphylactic food allergies at a very early age. He is currently enrolled in The Food Allergy Institute’s Tolerance Induction Program, based in Southern California, in which he is involved in pediatric research. Mason is a member of the Montclair Film community in addition to playing tennis and guitar.
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