“We frequently use therapeutic play as a tool to help with communication, address any questions, and empower children by providing them with choices and a voice in their treatment plan,” said Behen. “This approach also helps children get used to the medical equipment, procedures and what to expect during treatment.”
Child life specialists need to remain flexible in their plans and thinking because scheduling changes can happen.
When children need proton therapy, they often require it as soon as possible, so last-minute simulation appointments occur frequently. During a CT simulation appointment, images are taken of the patient in treatment position in order to develop a radiation plan that targets the tumor and avoids as much healthy tissue as possible.
Behen prioritizes being available to children on their initial treatment day, as well as during their first several sessions, recognizing that these early experiences can be particularly overwhelming.
The presence of large medical equipment and the need for a treatment mask can be intimidating for children, and Behen aims to provide emotional support and guidance during this critical time to help ease their anxiety and facilitate a more positive treatment experience.
“Play is the natural language of children,” said Behen. “Through play, we create an environment where children feel comfortable expressing themselves and engaging in conversation. We ensure that all their questions are answered honestly, in a manner appropriate for their age. When children trust their medical team and feel they have some control over their experience, they are often better equipped to manage even the most challenging situations.”
At Fred Hutch’s proton therapy facility, the pediatric consultation routine includes using the NASA-themed room for the initial intake and watching a video featuring astronaut Kjell Lindgren together with the patient navigator team. Afterwards, a child life specialist and a nurse meet the child and their caregivers in an exam room.
“Children who have watched the video tend to ask more informed questions and are better emotionally prepared,” said Behen. “This is likely due to the visual preview of what to expect, which contributes to better coping mechanisms during procedures such as simulations. The video also serves as a valuable educational tool for parents, who often face challenges in navigating the treatment process.”
Child life specialists use many resources to help engage pediatric patients, including programs like Beads of Courage — a coping program that uses beads to allow children and teens to tell their story of illness and courage — and Hope for Henry, which incentivizes pediatric patients to take all the steps necessary to successfully complete demanding, life-saving procedures that can be especially frightening for young patients.
There is also a playroom that was recently revamped to include medical play components, so children can have an informal way to explore what happens at the clinic.
“My favorite aspect of work is the opportunity to connect with families and build meaningful relationships,” said Behen. “I often see patients over a span of several weeks. Recently, I formed a bond with a 6-year-old boy through a game of Wii soccer, which turned into a lighthearted competition. On his first day of treatment, he greeted me with a playful wiggle of his eyebrows and asked, 'Rematch?' Now, he asks that his mother bring him in early for appointments so we can spend time playing together. I believe this interaction is helping him cope more effectively with his ongoing treatments.”
The proton therapy child life specialists are optimistic that they will be able to extend their services to children of adult cancer patients in the future, similar to a program already implemented at the Fred Hutch South Lake Union Clinic. Children of adults in cancer treatment also face distinct emotional and developmental challenges that would benefit from dedicated support.
Learn more about child life on our proton therapy webpage.
