Building Relationships

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By Laura Fonda Hochnadel
elderly patient in clinic

An O&P student from Northwestern University Prosthetics-Orthotics Center works with a patient in ROMP's Zacapa, Guatemala, clinic.

Photograph by ROMP volunteer Paula Cavanaugh, courtesy of ROMP.

When a large-scale disaster strikes, help from around the world often arrives in droves. Such was the case with the catastrophic earthquake that struck Haiti in January 2010. While O&P nongovernmental organizations (NGOs) had already been working in-country, efforts were amplified. The need for O&P care at such times is urgent. But, the need for O&P care in less-resourced countries is always prevalent, if not urgent. Fortunately, multiple O&P NGOs-room doesn't permit us to mention them all-have found niches in which to operate and provide continuity of care. Their work underscores the importance of building relationships with in-country healthcare providers and governments.

Network, Network, Network

"The thing that really has made the big difference in our ability to continue providing services has to be the relationships and the connection we have with the people in Belize," says Robert Kistenberg, MPH, CP/L, FAAOP, cofounder of Prosthetic Hope International (PHI) and its sister organization, Prosthetic Hope Belize (PHB), which provide O&P care in Belize. "Because if you want to go down to any developing country and provide services, you have to have a really good support network, and the key is finding out what they need." The need in Belize was easy to determine, he says, as there were no prosthetic services when he arrived.

Kistenberg first traveled to Belize in 1995 as part of a mission trip to provide prosthetic care. For the next few years, he and a handful of friends returned annually to carry on that work before PHI (formerly Sonrie Ministries) was formally established in 2000. He and volunteers operating through PHI/PHB have been going to Belize at least biannually ever since. Volunteer teams include O&P students, practitioners, technicians, and administrative workers. In 2002, PHI/PHB received grant funding and purchased a building in Orange Walk Town. There have been bumps and roadblocks associated with property ownership and operating a clinic long distance-including the logistics of stocking the facility, paying utility bills, having tools stolen, and organizations' hesitancy to partner with PHI/PHB. Yet the care Kistenberg and his staff provide is always welcome, and with new systems and new in-country staff in place, he feels the clinic has turned a page for the better.

"I really feel like we are at a position now that we have made great connections with stakeholders... from the national health insurance, to the ministry of health, to the hospital systems, and the other support networks, as well as the parents and patients," Kistenberg says.

Dino Scanio, CO, clinical director and founder of the Florida O&P Outreach Team (FOOT) Foundation concurs about the value of strong networks. FOOT Foundation was organized nine years ago and the majority of its efforts have been focused on providing O&P care to children in Guatemala. "It took about a year to really develop the network, the foundation, the understanding of the governmental policy in Guatemala," he says. "You have to have your relationships strong and solid to be successful." Word of mouth traveled quickly, and the highest levels of government found out about the foundation's work; he and his colleagues then received an invitation to the government palace. "This was not only an honor and privilege but also an opportunity to discuss how the government can support our efforts. It was a remarkable chance to build a strong friendship with a common goal to improve lives, because friendships like this can make a difference."

FOOT Foundation operates an ongoing clinic at the Hospital Infantil de Infectología y Rehabilitación in Guatemala City, and when Scanio travels there he is accompanied by a core group of three practitioners and a technician.

However, it's not always easy to make those connections, cautions Jon Batzdorff, CPO, founder of ProsthetiKa. He was among a group of volunteers who traveled to Ukraine for the first time last April to provide prosthetic care, rehabilitation, and prosthetic training. It is a large country with a large population, and with that comes a large bureaucracy and associated frustrations. "Basically, within the government level in a country where corruption is rampant, change happens when there is some kind of financial incentive for the bureaucrats who are responsible for making the change," he says. "We are actually working with the government ministries.... We are getting some cooperation from the government, but it's slow and laborious."

Batzdorff says it is necessary to find the champions of the cause and work with them. Sometimes those champions are practitioners, and sometimes those champions are patients and the communities that serve them. "The motivation and inspiration goes from the bottom up," he says.

Batzdorff's experience in this area is significant. Although 2015 marked ProsthetiKa's first trip to Ukraine, the NGO has been operating since 2004, providing care in Mexico, India, Bolivia, and elsewhere. He emphasizes that involving local people in the country in which you are working not only forms relationships but shows respect for the people and the community.

PHI/PHB involves local stakeholders by partnering with the Belizean healthcare system, Kistenberg says. "At least once a year, or whenever I go into the country, I will sit down and meet with the medical director and hospital administrator so they know what is going on with the clinic, what we are doing, and what our plans are." These individuals have a good idea of the O&P care that is needed in the country and can get word out to satellite hospitals, which will, in turn, get word out to patients.

child being fitted for prosthesis

ROMP provides continuity of care, which is especially important for pediatric cases, as children outgrow their devices and need more frequent replacements than do adults.

Photograph by ROMP volunteer Paula Cavanaugh, courtesy of ROMP.

From a Closet to a Clinic

The Range of Motion Project (ROMP) was established in Zacapa, Guatemala, in 2005. The location was chosen based on a perceived need in the community for O&P services, says Patrick Mathay, the NGO's executive director. "The clinic itself started in basically an unused storage closet [in a hospital] that they put a pizza oven and some tools into and started just making limbs." In 2007, the Loren J. Mallon Centro de Rehabilitacion, a full-service O&P clinic and fabrication facility, was constructed; it is now staffed by local practitioners-two prosthetists, two technicians, an administrator, and a clinical hygienist. (ROMP also has a mobile O&P lab that services medical partners in Western Guatemala and Chiapas, Mexico, and a research facility in Quito, Ecuador, where the NGO provides financing for medical partners that provide O&P care.)

ROMP is increasing efforts to formalize its work with the existing healthcare system, Mathay explains. "[W]e are increasingly eager to integrate our services with the broader healthcare system so that we can avoid redundancies and really work for the patient, so that they can get the best outcomes possible." For example, ROMP is able to provide physical therapy (PT) to its patients through a partnership with Universidad Mariano Galvez de Guatemala, Guatemala City. Guatemalan PT students work in the ROMP facility six months per year, while patients living in the capital are referred to the university campus. "Delivering a prosthesis is...but a means by which we achieve our true objective-full patient rehabilitation. Partnerships like this are a small but important step in creating that kind of value for our patients," Mathay says.

ROMP has also formed relationships with master's-level O&P programs at Northwestern University Prosthetics- Orthotics Center and Baylor College of Medicine. The students travel to Guatemala to gain experience working in a developing country, and the Guatemalan staff can get access to some of the latest techniques or latest schools of thought in O&P, Mathay says.

Sustainability

English: self-sustaining
Spanish: autosostenible
Ukrainian: samoobespechyvatsya

No matter how you say it, it means the same thing: the ability to maintain oneself or itself by independent effort. Each of these NGOs stress sustainability- ensuring that the clinics carry on year-round with local staff and, for the most part, that devices can be fabricated or repaired in-country with locally available materials.

"We work with a local practitioner at the hospital, Julio Duarte, who has been with us since day one," Scanio says.

Guatemalan child

Lema has been receiving prosthetic care from FOOT Foundation for over five years. This photo was taken when she first came to the clinic.

Photograph courtesy of FOOT Foundation.

When Scanio is home in Florida, he and Duarte communicate via e-mail and Skype so the clinic's work continues without him. The local staff work within their skillsets, Scanio says, and seek help from him and FOOT Foundation for more difficult patient cases.

ProsthetiKa's humanitarian ventures include education as the primary aspect, Batzdorff says. "If we were going to measure our success primarily by the number of patients that we fit, then we would just tell the people who are inexperienced to get out of the way and just do the fittings [ourselves]," he says. "This is the opposite of that."

The importance of providing O&P training to in-country healthcare workers is underscored by the nature of limb loss: It's a permanent state, requiring lifelong prosthetic care. So when a prosthesis breaks, the patient must have an accessible clinic to make repairs, Mathay says.

Never underestimate the local practitioners' ability to improvise, Scanio adds. "I've literally seen [local practitioners] hand-whittle metal sheets to make joints. They know what to do to sustain their level of living."

While the goal of self-sustainability is commendable, there are barriers to implementation, one of which is always funding, Kistenberg says. In Belize, health insurance does not cover O&P, so those people who do have savings must spend their money on hospital bills and rehabilitation, leaving nothing for a prosthesis. "How would the environment in Belize or in any developing country be able to cover the cost of providing services?" he ponders.

In view of this financial barrier, PHI/PHB, FOOT Foundation, ProsthetiKa, and ROMP operate on a humanitarian sliding scale. This means that some patients get their care for free, and what others pay may not cover the total cost of the device and care. Those who can afford to pay for care from a local practitioner in private practice are guided that way.

Why Do It?

As our interviewees attest, their NGOs require hard work, demand long hours, and are fueled by passion. They must take time away from their jobs and families. So why do it? There are a variety of answers: It's about the patient relationships-seeing children grow up and advance through their prosthetic options, international practitioner relationships and information exchange, and because the need is there.

"I felt when I first went there and got the clinic that I made a commitment to the country and to the people that we would try to solve this problem that they had no services," Kistenberg says. "I still have that same commitment." He also claims stubbornness and being unwilling to accept failure as driving forces.

"There's a great connection when people in prosthetics, prosthetists, get together from different countries," Batzdorff says. "I think that they find that there's a lot that can be shared even with the language barrier, and part of that is the passion and dedication and understanding."

"There is nothing greater than to see a dad walk in carrying his child, who has no legs below the knee, and that child gets up and walks or stands for the first time," Scanio says. "[P]assion and helping humanity will motivate you to push beyond your personal limits and that will inspire you to bust your ass to make it happen.... At the end of the day, you will be rewarded by smiles and tears of joy by those you have helped, and that's why I do it."

Laura Fonda Hochnadel can be reached at .