Undergraduate Researcher
Winter 2019 - Summer 2019
While participating in the HuskyAdapt VIP Course, designed to expose motivated students to pursue topics related to accessibility, and lead to my involvement as a researcher through the summer, where the project was expanded to encompass experiences throughout the world. My team interacted with the eNABLE community to provide information to stakeholders that will improve the experience recipients have with their eNABLE devices. eNABLE is a community that makes and uses 3D-printed hand prosthetics. My team was challenged with this problem:
The experience of the process of ordering, retrieving, and using eNABLE prosthetics is not well documented. It is my team’s goal to provide information about this experience to makers and designers so as to improve future experiences
It was my team's goal to provide information about this experience to makers and designers so as to improve future experiences. To do so, we started by interviewing recipients and makers. Our findings contributed to "The Global Care Ecosystems of 3D Printed Assistive Devices".
RESEARCH
This was largely a research project. We are currently submitting our academic paper to HCI conferences. However, I hope you enjoy reading about the process and find our takeaways interesting!
interviews
Initially we attempted to interview eNABLE users in the United States, but the users we were able to contact had yet to receive their devices and learn how to use them. After this, we broadened the scope of our research to include users of private prosthetic companies so that we could compare the experiences of receiving and using a “traditional” prosthetic device, and a 3D-printed one. In the end we had interviewed 16 stakeholders globally.
To create our data intake protocol, we brainstormed different ways to interview people. This included a card sorting activity, where they user could prioritize different factors of their experiences. However, the people we interviewed lived throughout the United States, and we determined that talking over the phone or having video calls would be better.
Our findings during the time of the HuskyADAPT course are compiled in the poster below.
A lot of the people we interviewed were available to help us due to the snowballing effect. Our professor knew the Chief Technology Officer of a private prosthetic company, and from there they recommended us to the CEO of another private company, who recommended us to an occupational therapist of another private company.
data analysis
To analyze the data, we coded the interview transcripts. Doing so entirely with a remote team made organization critical. To keep track of all our data, we made a table that we updated as we transcribed interviews and analyzed them.
First, I helped with categorizing some of the data we found. Afterwards, we began finding qualitative data to support those codes, and continued to categorized as we found more depth in certain aspects.
FINDINGS
"There is a government office where we call-in to get attention. They then set up an appointment with us and one of their doctors [...] the doctor will interview us to get an idea of what we need and our measurements. The doctor then works with the university [maker community that is also paid by the state] to get our device ready. Once the device is ready they call us back we pick it up and setup a schedule for therapies so we can learn how to use the device and the device is sometimes modified to better fit us [...] we are from low income families. We don't have to pay anything. This is all from the government..."
Doctors and makers are more involved with creating the most optimal device for users in other countries. This is as opposed to people using prosthetics from private companies in the US, where the client’s main contact is their prosthetist, who then seeks an optimal device for the client and contacts the prosthetic manufacturing company so that the client does not contact the maker of the prosthetic directly.
"I wish I did have therapy, but I live in Kentucky in a really small hometown and, you know, I’m probably the only upper limb amputee in my town, that I know of, especially a bilateral, like, there’s not anyone around here that’s lost two arms. And, I had a therapist but she had never worked with an amputee before. So, I mean, I really had to work hard to figure all this stuff out. Like, I didn’t have the luxury of somebody having someone teach me about prosthetics as a bilateral amputee because there was nobody around here."
Location is a determining factor in the continued care for the prosthetic user. It is harder for people who live farther from physical therapists or their prosthetist to continue their after-care, an important aspect of benefiting from their prosthetic devices.
“The medical insurance world is able body people making decisions for non able bodied people, and so they really limit how much therapy and stuff you get. And on the flip side, on the medical side of things, it’s the insurance company that’s paying the doctors bills, so they have to dance to the insurance company ... I was lucky, mine was workers comp. So they paid for most everything I’ve asked for. On his side of things, where it's just his medical insurance, their rule of thumb is just deny, deny, deny, and you really have to fight.”
In the United States, the insurance companies hold a lot of power of who gets devices and who doesn't. There are many factors that play into whether someone gets a devices, and it leads to hardships that not all families can withstand.
REFLECTION
This project was an incredible experience. I learned how to find people to interview and how to do qualitative analysis with a primarily remote team. I did not expect so many resources to surface from just talking to people. Many of the people I interviewed came into contact with me due to the snowballing effect: one person would refer us to another, and so on.
Something I learned about interviewing during this project was how the conversation flows more smoothly without a procedure to follow. It is important to keep the data gathering consistent during interviews, but I found that by having touchpoints instead of a list of questions felt more natural. I also learned how to ask better follow-up questions, to help delve deeper into the details of people’s experiences.
My favorite part of this project was all the unexpected stories we uncovered while talking to more people. I also enjoyed the global aspect of our research, and look forward to finding more ways to get involved in global UX.