Providing Advocacy and Support for Those With Pediatric Brain Cancer

Families of children with pediatric brain cancer must lead the charge in advocacy for their child, especially in under-resourced school systems, according to Kasey Rangan, certified pediatric nurse practitioner.

In an interview with CURE, Rangan sat down to discuss ways that patients with pediatric brain cancer and their familiar may advocate for themselves, specifically when it comes to mental health and educational support. She went on to emphasize that regular testing to identify any challenges is vital, and that familiar should be prepared to push for necessary accommodations for their child.

Rangan has expertise in neuro-oncology and works at the Children's Hospital Los Angeles (CHLA).

Transcript:

For patients with pediatric brain cancer and their families, there is an unmet need for better mental health support. How can patients and their families advocate for themselves?

Advocating for [our kids] in school is going to be one of the best ways to do that, because oftentimes they fall through the cracks. We know schools are famously under-resourced, and it's only getting worse. I tell families to really get good neuropsychological testing done and then use that to work with the school to get the resources available to them. So, whether it's ABA therapy, tutoring, extra time, or extended summer classes, I think for most of our school-aged kids, that's going to be one of the best ways families can advocate.

It can be quite challenging, especially if the school district doesn't want to offer those supports or tries to find ways to not offer them. Sometimes families have to get a lawyer; there are low-cost and legal aid centers available, especially for education. But having that concrete neuropsychological test is going to be one of the most important aspects, and it will be frequent, so you'll get them every couple of years. I think that's also what families need to understand, and I don't think they fully grasp the importance and role of neuropsychological testing and how it works hand-in-hand with determining what actual issues are related to the tumor and what could be compounded by mental health.

For instance, we know that depression can cause additional problems in learning, and if there's an underlying ADHD or autism diagnosis, we need to look at how all those things play together. Parents need to recognize that they will, unfortunately, have to be their child's advocate, or the individual will have to be the advocate. It's hard for our kids because if they're developmentally delayed, they can't advocate for themselves. So, we really help families understand that it's okay to speak up and reach out to the treatment team for problem-solving when they have difficulties advocating for their child.

This is probably, for our patient population, before they reach young adulthood, because depending on what age they get treated, that's one of the ways parents can advocate and help with their kids. Sometimes, our kids get placed in special education that isn't appropriate for them, so they don't get the social interaction or social skills they need because they're put in a classroom with kids who are non-verbal or really developmentally delayed, and then they're not getting the peer-to-peer interaction they need to help them as well.

All of those things considered, I think school advocacy and neuropsychological testing are the best way to start, because neuropsychology will be able to help tease out what will be most beneficial for them, and then the family needs to understand that advocacy really comes down to them. They have to be ready to fight, and we will be right next to them to help them fight, but a lot of it has to come from their end when it comes to the school.

Transcript has been edited for clarity and conciseness.

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