e-NABLE Brazil: everyday dynamics and challenges
With the leadership of Dr. Saiph Savage, Dr. Jennifer Mankoff and Dr. Jon Schull from the ‘follow-up’ research team for e-NABLE, 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.
By interviewing Everton Lins, a dedicated project manager from Brazil, we were able to get a sense of the dynamics with which they are working there and the everyday challenges that they face in this massive country where getting support for those who need it the most is not as easy task. One of the biggest difficulties in Brazil is that there are a lot of people to help and not enough resources to do so. The free national healthcare system allows an adult to get an assistive device within an approximated time of two years. In the case of children or teenagers who need prosthetics, making use of this healthcare system is out of the question since they rapidly grow out of devices. The goodwill of many Brazilian citizens has resulted in numerous volunteering cases of downloading, printing and delivering prosthetics to people in need. Unfortunately, as our interviewee explains to us, these actions can lead to serious long-term problems for users who, without advice from a medic to know which is the right device for them and how to adjust it properly, could get irreversible damage. Thanks to numerous meetings of various groups with government officials in an effort to prevent these risks, there are now restrictions that demand a formal requisition from a doctor that will be involved in the device donation process. So the first thing that they ask when a potential user contacts their team is if they already had a doctor evaluate them. If so, they schedule an appointment with him in order to explain what e-NABLE is and present the device options; if not, they find a doctor near the place of residence of this person, who understands and is willing to give his support throughout the evaluation and donation process. This creates a responsible work environment where physiotherapists, designers, makers, administrative personnel and other volunteers, can make a significant impact through their collaboration.
A very outstanding quality that this Brazilian team has is that they have analyzed and understood the broad picture of the process needed to have a successful donation in which the user will continue to make use of their device. That is why they also offer psychological consults with the recipients to work on expectations that the kid or the adult has regarding the prosthetics. There are two types of potential users: people who were born with a disability and people who suffered a limb loss. For the first type of user, getting an assistive device may not feel so assistive at the beginning. They are used to doing everything without a device and using it will slow them down and make them feel that they do not really need it. For the second case, the device could fulfill a more psychological need though it will never replace the limb that was lost and this could be frustrating for the user or those surrounding them. It is crucial to talk about these topics with the patients as well as to make them understand that there is a learning curve and only practice will allow him or her to take advantage of their device in not all but some activities. Kids should understand that medical devices are not toys and should be taken seriously in order to make the most of them.
This team also believes that there must be a close one-to-one dynamic between users and volunteers so that the users won’t abandon their devices. If the device is delivered and the volunteer checks-in 6 months later to ask how it’s going with the device the most probable scenario is that the user will lie and say that everything is wonderful. There has to be a relationship of confidence and trust in which the user feels regularly supported by this community and knows that it is important to be honest about the feedback that they give to the volunteers. Thanks to this user-volunteer relationship the e-NABLE community in Brazil has been able to create a protocol for rehabilitation and with that, they are creating a document like a know-how for physiotherapists (that will be published shortly) to be used on the future users based on the experience with some of the users with whom they were able to work closely. To achieve this type of relationship is often a challenge due to, amongst other things, long distances, lack of financial aids and lack of motivation from volunteers. In order to avoid the latter, potential volunteers in Brazil must go through a sort of recruiting process where they get the preparation they need in order to be a responsible volunteer. Also they must belong to a so called chapter that they respond to and all chapters in turn respond to a central group that manages them. With this structure they can have the information and quality go through the first link of the chain until the last one to make sure that the goals of this community are met. This way they can also ensure that the safety of both the users and the volunteers is not compromised, thanks to the protocols and legal documentation that is signed by both parties.
In order to address their financial difficulties, the interviewed project manager meets regularly with potential sponsors that are interested in this organisation. The donations they have received so far have been in the form of printing materials only (Polylactic Acid or PLA). Everton is looking forward to create a section on an official website where donors can see exactly how their valuable donations are being used. Besides from these donations, all chapter’s costs are covered by the volunteers. The medical team is also composed of volunteers only and is lead by a physiotherapist who is the focus point in Brazil and helps train other doctors, as well as evaluate cases in which there are no doctors nearby. This physiotherapist is the developer of the rehabilitation protocol and the reference for e-NABLE’s medical activities and projects; she and her team are currently working on e-NABLE devices only. Her collaboration has been vital for this community since she has made the evaluation process a lot more efficient.
After asking about the steps that they follow when a repair is needed, our interviewee acknowledged that since they only work with volunteers, it becomes hard for them to organize and handle repairs so perhaps it would be a good idea to work on a protocol for repairs that would be implemented with the supervision of the chapters.
In other interviews, we have heard about cases of doctors having a hard time while trying to develop and master maker skills in order to make the necessary adjustments to fit the needs of each patient. The way they do it in Brazil is that designers or makers and doctors work together to make the adjustments instead of having the doctor develop maker skills which is less efficient. We also found out that some volunteers can take too long to make adjustments, either because they are not experts, due to a lack of motivation, or a weak organization from the administration.
It was so inspiring to chat with someone so passionate about helping others in a proper way. Our interviewee mentioned that he would like to see e-NABLE grow until every volunteer and every manager are connected and know what and how they have to deliver. He understands and cherishes the importance of the time that serious volunteers devote to this sort of projects and he talked about the PMI (The Project Management Institute) where it is not easy to become a volunteer that manages a project or initiative on behalf of the PMI. Their recruitment process is extremely challenging so that they maintain a high standard on the service of each person collaborating there and he believes something like that would help the e-NABLE community to work in a more efficient and coordinated way. Everton also believes it would be very helpful to have people working full-time on administrative tasks; people that are organized enough to keep structure and prepared to make important decisions. Sometimes he or his team members have to analyze their waiting list and decide to deliver a device to a father of three who needs to work before they deliver one to a kid, to name an example.
In his opinion, it is obviously important to make the technical work happen; the work of the makers and the designers there, on the front lines, with the recipients. But you have to have people working behind them to get the data, to organize, to coordinate, to control, because it is not useful to just print and deliver devices; the whole process is crucial.