This blog is brought to you by Gokul Krishnan, Founder of "Maker Therapy"
In September of 2013, when I was a Ph.D. student at Vanderbilt University’s Peabody College of Education, I was introduced to Brandon, a bright and aspiring high school senior whose goal was to become an engineer. Unfortunately, Brandon had been diagnosed with Leukemia and was undergoing treatment in the children’s hospital. To support Brandon's engineering aspirations, I provided Brandon with a "Mystery Box" that held a variety of digital and physical materials, such as an Arduino microcontroller, LEDs, a string, a plastic cup, an eraser, and LEGOs. I encouraged Brandon to use these materials to design and make anything he could imagine. Just overnight, Brandon designed and built a night-light for nurses. The purpose of the light was to illuminate a patient’s bathroom, thus allowing nurses to determine if any trash needed to be disposed of without turning on a bright light and waking the patient. Just like an engineer, Brandon saw a problem and came up with a remedy using the materials at hand.
This experience with Brandon inspired me to engage with other children at the hospital, using additional tangible learning tools such as littleBits. The results revealed multiple demonstrations of children enjoying their learning and coming up with creative DIY or “Do It Yourself” solutions. It also became clear that the children’s creations fell into four general categories, including room decorations, privacy-maintaining devices, gadgets that depicted a patient's mood or state of well-being, and contraptions intended to scare or prank adults, especially nurses. These experiences inspired me to come up with a new and exciting idea — “Imagine if there were a space that could provide children in the hospital with creative outlets and learning opportunities!” In many settings, this kind of creative space is frequently referred to as a “Makerspace.” However, a Makerspace is typically set up as a specific physical location where people can gather to share resources and knowledge, work on projects, network, and build. This presents a considerable challenge in such an unusual learning setting like a children’s hospital since safety concerns and cross-contamination issues often arise which make it impossible for many children with chronic illnesses to leave their rooms to participate in such spaces. But I envisioned an ingenious solution to this issue: I decided to design and construct a mobile Makerspace — that is, a creative learning space that could be brought directly into the patient’s room.
Mobile Makerspaces are mobile maker environments that provide a variety of physical and digital materials that children can explore in their hospital rooms. Children are invited to use these materials and devices to pose and solve personally meaningful problems by deploying an array of human, material, and environmental resources around them to drive their own learning. Patients often do not feel in control of what happens to them in the hospital, but these mobile maker environments encourage hospitalized patients to change the circumstances of being sequestered in their rooms. The mobile Makerspace intends to provide children at the hospital with creative outlets and learning opportunities, and equally importantly, to encourage social interchange with others and to improve patient healthcare by increasing physical activity. The design of the mobile Makerspaces resulted in the creation of an innovative approach to patient learning, called “Maker Therapy.” (www.makertherapy.com) This innovative approach, called “Maker Therapy,” is a way to motivate hospitalized, chronically ill patients to be more physically active in their learning, while at the same time enhancing their sense of agency and identity.
I would like to share some of the critical lessons that I learned during this journey which led me to create Maker Therapy.
The first lesson that I learned was: “Do not take NO at face value.” When I initially proposed my mobile Makerspace idea to the children’s hospital, I was faced with a surprising amount of resistance. Instead of the children’s hospital immediately welcoming my innovative idea with open arms, I was instead presented with a number of reasons why my idea could NOT, in fact, be done...like: “We can’t do this project on account of resources, time, money, and the fact that our main priority is medical care.” However, I decided that this initial “NO” reaction would not prevent me from working hard to find a creative “YES” solution to these challenges to implement my idea. I then started to explore other ways to convince the hospital to recognize the incredible benefits that the mobile Makerspace could bring to the lives of so many chronically ill hospitalized patients with their support of my project.
This led to the second lesson that I learned: “The power of storytelling.” After receiving the “NO” response from the hospital, I immediately decided to try to seek out grant and seed money to bring my idea to life. However, I was faced with the additional challenge of providing a compelling argument for my idea in the proposal that I submitted to potential funders. For me, the question was, “What’s the BEST way to convince people to support my idea?” I found that the answer to this question was actually more simple than you might imagine. I decided to share with people the unique and powerful “stories” of how creative the children at the hospital really are. I knew from my experiences during earlier pilot studies I had conducted that these weren’t just a bunch of “sick kids” we were talking about — but rather young patients with big imaginations and huge, untapped potential to design and create and invent. This concept of sharing personal stories turned out to be one of the most important things that I learned while working at the hospital — the amazing power of simple storytelling!
After sharing patients’ stories with Intel Corporation and other generous sponsors, I ended up receiving grants and additional funding which allowed me to conduct a pilot study using my mobile Makerspace idea at the children’s hospital. With the launch of this initial study, I learned another important lesson: I put a high value on taking a “patient-centered approach” to my program implementation, putting the patients and their needs at the center of my initiative. I invited patients, their families, and hospital staff to become co-collaborators in my research and the implementation of the mobile Makerspace. For example, before the fabrication of the mobile Makerspace, I first decided to talk to patients about this idea to get their feedback about how they thought a mobile Makerspace should look and function to help support their learning while in the hospital. Patients provided me with a variety of helpful design ideas, suggesting that the mobile Makerspace: (1) be colorful and bright, (2) be engaging, (3) serve as their own workspace, and, (4) encourage collaboration. This focus on patient-centered design contributed to a better overall experience for patients in the hospital as they engaged with the mobile Makerspace. As many patients told me, “Because of the mobile Makerspace, I’m actually now excited to come back to the hospital!”
5 years on, the idea of bringing Makerspaces to children’s hospitals has significantly grown. With support from a grant from the National Science Foundation (NSF) I have been able to open the world’s first Makerspace for Adolescent and Young Adult (AYA) Cancer Patients at Lucile Packard Children’s Hospital Stanford (LPCH/Stanford); and partnered with Ronald McDonald House Charities (RMHC) Bay Area in opening the world’s first family-centered Makerspace for patients, families, and siblings at the Ronald McDonald House Stanford. The collaboration with LPCH/Stanford and RMHC will enable me to nimbly replicate Makerspaces at different locations that will adapt to culture and populations served at each institution.
What is my vision for Maker Therapy? Just in the US alone, 5% of hospitals are children’s hospitals. That’s close to 300 children’s hospitals. Imagine the potential for a more hopeful world that would be produced by the implementation of Makerspaces in these 300 children’s hospitals. So many chronically ill children spend months of their lives in hospital settings. All of them are balancing the tasks of learning to be patients with a chronic illness with the task of learning to become young adolescents, who also have lives outside the hospital.
I hope that, with the implementation of Makerspaces in children’s hospitals across the country, it will be possible to create a world where young patients...
... are intellectually stimulated and generally healthier.
... where they are the next generation of scientists and inventors.
... where they no longer see themselves as a burden on society, but rather as having the potential to create value.
… where they no longer focus on short-term health crises, but rather on preparing for the distant future.
That is the world we can achieve with Maker Therapy. I am a voice for the children with chronic illnesses and their families who have shared their lives and their stories with me. The privilege of working alongside these young patients gave me the opportunity to see these children not as merely "sick kids" in the hospital, but as bright, imaginative, and inventive kids who have the potential to design and create and live fuller and healthier lives.