MUSC student creates coloring book to help pediatric patients with cancer-related fatigue

Sometimes you just know. And for Maddie Gies, she knew in the fifth grade. After the MUSC College of Health Professions student visited an occupational therapist for help with sensory processing, she was captivated.

“I probably annoyed my therapist because I would ask her ‘Why?’ And I wasn’t trying to be a brat,” said Gies. “I genuinely wanted to know why we were doing what we were doing – the evidence behind it – because I could see that it was working.”

That was when the first thoughts about her future career began for Gies. She started volunteering at school in an autism resource classroom, igniting a passion for helping others – a passion that deepened when her family welcomed a friend with cancer into their home, when Gies was in high school. She realized how hard that time was on not only the friend, but for her whole family, who became caretakers.

“I think that person would have really benefitted from occupational therapy,” said Gies. “It was such a strain on us, and that didn't mean we didn't love the person, but by giving that patient more independence through OT, I think it would have helped our entire family dynamic. If you give the patient independence, it relieves some of the caregiver burden, and that's very real.”

“When I sit down with families to introduce the program, most caregivers say that they had never heard of cancer-related fatigue or that they do not know how to manage fatigue levels.

"That results in their child not being able to engage in their normal everyday activities. Most parents are distressed by this but are unsure of where to start or even if there is a place to start. It feels good to have an evidence-based tool to help families to gain back some control in their lives.”

Maddie Gies
occupational therapy student

Gies attended the College of Charleston, where she got a degree in special education and then came to MUSC with the hope of becoming a school-based occupational therapist. It opened her eyes to how vast the world of occupational therapy really is. She remembered those few years in high school when she and her family took care of their friend with cancer and knew how beneficial occupational therapy could have been.

“When we had opportunities for little projects, I would look into oncology with occupational therapy and everything I was reading was saying how underutilized it is,” said Gies. “So, I decided I wanted to do that.”

What started as a personal passion project has evolved into the basis for Gies’ work this semester as she participates in her capstone project. This project serves as a culmination of her academic journey, demonstrating her mastery of her chosen area of study. Students choose a topic to focus on, create a needs assessment and then develop a program or project that investigates and highlights their research. Gies discovered through her research that there was a need in the pediatric cancer arena – helping children and their caretakers to identify and address cancer-related fatigue.

So, combining her passion for working with children, occupational therapy and oncology care, Gies created a coloring book – Izzy’s Daily Bucket – to help.

In her research, Gies discovered that there are three main symptoms that patients report as a result of cancer or cancer treatment – pain, fatigue, and nausea. Out of those three, fatigue is the symptom least likely to be addressed or managed by health care providers.

Gies found that the issue can be exacerbated for children, as health care providers and parents often underestimate the levels of fatigue they experience.

“There can be several misconceptions,” said Gies. “Like, ‘You have cancer; you’re going to be fatigued, and that’s just the way it is.’ Or ‘they just need to sleep.’ But excess sleep can actually make fatigue worse. ‘They don’t need to exercise.’ But if you don’t exercise, the fatigue is going to get worse. Also, parents see their children still playing. Children are very resilient. So, they think they’re not fatigued.”

So, Gies created a survey for health care providers interacting with oncology patients at the MUSC Shawn Jenkins Children’s Hospital as well as parents. Findings revealed that children experienced higher levels of fatigue than many anticipated. Furthermore, it showed a common misconception among caregivers that treating fatigue was someone else’s responsibility. They understood the importance, but in many cases, no one was addressing it. There was a void, and Gies wanted to fill it. And that’s how the idea for Izzy’s Daily Bucket was birthed.

Izzy’s Daily Bucket is a coloring book that follows a character named Izzy from pre-diagnosis to diagnosis and then through her cancer journey and how she experiences fatigue. While reading, there are questions for the children to answer related to their own fatigue levels. In the book, Izzy has an occupational therapist (named Maddie) who helps Izzy to find ways to conserve energy through gaining coins. The coins go into Izzy’s bucket.

“So, the idea is that the bucket represents the person, and these coins represent energy,” said Gies. “So, when you’re really fatigued, your bucket is empty or low but when you have the energy to do things, your energy bucket is full. It explains cancer-related fatigue on a child’s level.”

Gies created a whiteboard to go along with Izzy’s story. Each day, patients fill out how they’re feeling and how many coins they think they have in their bucket, and then they plan out their day.

“There are evidence-based ways to manage cancer-related fatigue, with planning out your day and engaging in exercise being the primary ones,” said Gies. “So, this is a way to gauge how they’re feeling, what they can take on for the day and then to check off what they accomplish.”

Gies even went so far as to illustrate the book using places that the children might see or experience at SJCH during their care, to make it familiar to them. She now sits down with prospective patients and their families, reads Izzy’s Daily Bucket with the children, and then teaches the whole family how to implement the whiteboard into their daily lives.

 

“When I sit down with families to introduce the program, most caregivers say that they had never heard of cancer-related fatigue or that they do not know how to manage fatigue levels. That results in their child not being able to engage in their normal everyday activities,” said Gies. “Most parents are distressed by this but are unsure of where to start or even if there is a place to start. It feels good to have an evidence-based tool to help families to gain back some control in their lives.”

She also organized an in-service event for current SJCH occupational therapists to teach them how to implement the program with future patients.

Once a family is using the Daily Bucket program, Gies will follow up once a week for four weeks to check in and assess their compliance with the program. The hope is to help children undergoing cancer treatment to be able to identify how they’re feeling and convey that to their caretakers and medical team. Ultimately, the goal is to increase their energy and engagement in meaningful daily activities.

Gies now has seven families participating and engaging with the Izzy’s Daily Bucket quality improvement program and is working to copyright Izzy’s Daily Bucket.

It’s starting to look like a fifth grade dream come true.

“I feel privileged to be able to work with families during what is likely the most difficult chapter of their lives,” said Gies. “I feel hopeful that this program will be sustainable to continue throughout the years and positively impact other oncology families at Shawn Jenkins.”

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