One of the possible final projects in the programme Creative Technology last year addressed how to improve communications when dealing with diffuse intrinsic pontine glioma (DIPG), a rare type of tumour primarily affecting children found in the area of the brainstem. 23-year-old Manouk Hillebrand was interested in the topic, funded by the Tobias Sybesma Foundation, but she wanted to put the focus on how to communicate with children. “It struck me as important—after all, they are the patients. Only six children in the Netherlands are affected by this form of brain tumour each year, which means that, ordinarily, no one would be developing technology for them very soon. I thought, I can make a valuable contribution here,” Manouk explains enthusiastically. She dedicated herself to the problem completely and received a ten on her final project1.
The Tobias Sybesma Foundation was set up by Reitse Sybesma, the father of Tobias, who was told just before his twelfth birthday that he had this deadly form of brainstem cancer. The foundation was set up after Tobias’s death to promote and finance research projects and initiatives that would advance successful treatments for those diagnosed with this particular tumour.
A delicate and difficult subject
“For my research I talked to Reitse Sybesma, an oncologist and other medical specialists, pedagogic hospital staff and home care workers. This gave me a good overview of the problem. Communicating with child patients about DIPG and cancer treatment is difficult because each child with the disease is a different age, comes from a different cultural background, has a different level of development, and greater or lesser sensitivity. The children are usually between the ages of 5 and 10,” Manouk says. “Although parents are very careful with information, the children can often feel that they are dying. Secretly they know that. Therefore, I didn’t want to focus on what was going to happen, but more on explaining the treatments. I wanted to concentrate on the actual steps.”
The informative side and the emotional side
“After discussions with specialists and my own analysis, I defined the most important steps in the treatment and made storyboards that would translate the information into child-friendly language. I’m more of a designer myself, so that worked out well,” Manouk explains with some degree of self awareness. “But the programme in Creative Technology obviously focuses on devising smart technological solutions, so I had to think up something to fit that aspect. I chose to work with QR codes for this part of the project, which lead the user automatically to a animation that explains one part of the treatment. But Manouk hadn’t yet completed her task. Manouk: “That takes care of the informative side of the story more or less, but there is also an emotional side. Like the well-known string of beads that is often used with cancer patients, I wanted to support the children during the treatment process and give them positive feedback. I thought of a cuddly toy that could give feedback. A cuddly toy that could really communicate with a child. That is of course a technical solution too. Ultimately I brought the ideas together in Badge Buddy, an interactive informational instrument for child patients.
Short introduction to Badge Buddy
Badge Buddy informs child cancer patients about the different DIPG procedures and treatments by means of animated videos. These can be accessed using a smartphone and scanning the QR codes on the badges. A child earns a badge for every treatment that he or she successfully completes. Pedagogic staff scan the badge to watch the video with the child patient. If a child has any questions, they can be immediately answered. The child can stick the badges earned on the toy. The idea is that the cuddly toy shows how brave the child has been and what he or she has already achieved. The cuddly toy can be placed on a specially designed base station that then lights up because the toy is “home”. The badges contain an RFID tag. When these are scanned underneath the base station, the system gives the child an encouraging compliment that fits with that specific badge.
Puzzle
The animations, the QR codes and the prototype of the Badge Buddy, including the base station, Manouk made all by herself. “I did have help from different people, though. I could always consult with other students, my supervisor and advisers for ideas and feedback about what kind of sensors to use or how to fine-tune my animations.” All the different aspects of the programme are interwoven in the project. “You really learn to appreciate the end user’s needs. It’s actually a puzzle involving a target group, technology and how you can make something that will improve people’s lives.”
Everyone got really involved
It’s not just the final results that give Manouk a feeling of satisfaction when she looks back at her experience. “What really stays with me is how everyone was there for me, to help me out. Even during the coronavirus crisis. Reitse, doctors and specialists, my advisers, other students. Everyone got really involved. That was one of the really nice things about this project.” And is this the end of it? “Perhaps not. Reitse and I are both enthusiastic about carrying on, because we would really like to help children with DIPG. So we are looking at whether we can further develop the prototype.”
1 The thesis is published at http://purl.utwente.nl/essays/87499.
