Guala Honduras: understanding prosthetic device user preferences and satisfaction
Interview with “Ximena” by Liliana Savage
Greetings! I am Liliana Savage, a human centered design research assistant working with Dr. Saiph Savage, Dr. Jennifer Mankoff and Dr. Jon Schull from the ‘follow-up’ research team for e-NABLE. The e-NABLE community delivers free 3D printed prosthetics to underserved populations at a global scale. We are conducting a series of interviews with makers and users of 3d printed assistive devices around the world in order to better understand device use, device connection with occupational therapists, and how the experiences of the people using the devices might be improved. This is one of the interviews in our series with information about what we learned from this interaction.
Ximena (not her real name) is a physiotherapist who studied in Costa Rica and is now focusing on social work and health. She started collaborating with Guala in Honduras, an organization that is like a “little brother” (formally called a chapter) to e-NABLE and is also allied to Po from Paraguay. These alliances allow Po to design sophisticated devices that are then printed by Guala. Our interviewee got to know about e-NABLE thanks to an internship in the U.S., where she met Dr. Jon Schull. She immediately got involved with the e-NABLE community where she noticed and conversed with Jon about the lack of questionnaires on user preferences and satisfaction. She is not a maker herself but she has been helping Guala since it first started its activities (2016). In Guala, Ximena currently deals with administrative tasks and is introducing the project to marginal areas that have restricted access to the internet and social media. She is also in charge of designing and organizing disability awareness workshops as well as conducting interviews to current users in order to gather and analyze data.
After interviewing with a 17 year old user with a congenital malformation, physiotherapist Ximena determined that physiological support is not what interests this user the most from an assistive device. The user confessed that he hadn’t been using his device that often because he is used to doing everything without it. The only thing that he wishes is that people would see him differently. He would like people to see him and think that he is capable of doing anything as good as the next person. Our interviewee discussed this with the Guala team in order to understand whether it is really possible to deliver devices to this type of user. After some time a brilliant idea of a collaboration came up. This young user decided he wanted to get involved in the Guala activities and participate in the organization and execution of workshops and events to raise disability awareness and promote organizations like Guala. This collaboration gives this young user the chance to show his value and demonstrate he can do anything he sets his mind to.
A second interview, this time with an almost 60 year old woman who lost her hand in a work accident, made our interviewee realize that this user has a strong psychological need as well. The woman declared that she is having a hard time dealing with her loss and getting used to this major change in her life. What she would like is to feel complete again, restore her confidence and go back to her daily activities. Currently, she makes use of her device on a regular basis for her work and everyday activities, although it has been uncomfortable lately so adjustments have to be made. In this case one can see that she wants the device to work for her and she is being honest with the volunteers by saying “I need to get it modified, please”.
The third interview that we were told about was with a 4 year old boy who, just as the 17 year old user, has a congenital condition. The difference between these two cases is that the young man is already used to doing everything without his device whereas the small kid is still developing his motor skills, which makes it more likely for him to give a more natural use and adapt to his device. When he first received his device, this boy brought it to school and all of his schoolmates were very excited and happy for him. He usually does not bring it to school anymore. His mother noticed that he is very selective with the activities for which he uses his prosthetic device and he takes very good care of it by keeping it in its special place (which is the box in which it was delivered). Often, when he wants to play, he takes it out of the box and uses it with joy. His parents are very thankful that he has the opportunity to grow up with such a device. The mother told our interviewee that her boy had always wanted to grab and drink from a cup with both hands and to be able to grab the cup and eat at the same time. She understands that the support that the device gives her boy is not crucial for now but it is small everyday activities that other people take for granted that this user is really happy to be able to do.
In addition to these evaluations, our interviewee organizes disability awareness events which often take place in rural areas. They consist of talks with topics such as empathy, social work and developing maker skills; workshops on how to design and assemble 3D printed devices; public deliveries of e-NABLE devices to users and of generic prosthetics to local clinics or hospitals. These generic prosthetics are not meant to be used; rather, their sole purpose is to give interested people an idea of how an assistive device would work for them. If they feel it is something they would like to have, they can get the contact information to get in touch with Guala.
The dynamics at Guala are somewhat similar to those from e-NABLE Brazil. People contact them through social media and they are redirected into a waiting list. Following the order of this waiting list, volunteers from Guala look for sponsors or donors who will support the delivery process, many sponsors and donors are from abroad. An example of a current sponsorship arrangement in e-NABLE Brazil is in the form of printing materials (Polylactic Acid or PLA). Both Guala and e-NABLE Brazil have difficulties to promptly answer interested or current users and to deliver devices due to their financial situation. We did not get into details with our interviewees on the difficult task of getting donors. However, we do believe that a professional assessment on the approach by each of the e-NABLE’s chapters to sponsors could give a boost to their pitches, increasing the chances of closing sponsorship deals.
Ximena is a motivated young volunteer who deserves a huge round of applause. Thanks to her effort and organization skills, communities like e-NABLE, Guala and Po are getting the visibility they need in order to reach their goals and receive the financial support that they need to operate. She comprehends, as does the e-NABLE community in Brazil, the importance of understanding user preferences and satisfaction is crucial in order to make a real impact. Interviewing with and applying questionnaires to users will provide e-NABLE and other similar communities with the valuable feedback they need in order to understand these preferences. These inquiries have to be designed by a multidisciplinary team of stakeholders (including physiotherapists, occupational therapists, makers, users, etc.) in order to make sure the right questions are asked. Not all users are fulfilled in the same way when it comes to receiving a device. Some have a strong physiological need for different activities, some have a stronger psychological need. It is important to understand both types of users in order to make sure their expectations and desires are covered.
