Nurse providing postoperative care to a child with cleft palate in Tulkarm, Palestine, 2011
Sustainability is also contingent upon sufficient funding and supplies for the care provided. Cleft care teams need to create continuous fund-raising initiatives, finding consistent ways to support the development of cleft care in the setting of interest. Cleft care is also dependent on supplies for multimodal therapy; therefore, seeking consistent support from supply companies can ensure that trips are successful. Many hospitals are able to donate unused or excess supplies. In addition to a steady stream of supplies, a cleft care team needs a base facility. A physical structure that serves as the home of cleft care simplifies patient follow-up, enables storage of equipment, and serves as a base for potential research and education projects in the community.
A sustainable model for cleft care involves handing off leadership to local practitioners. Foreign providers have to establish metrics for recognizing local cleft team members are fully trained to provide unsupervised surgical and medical care to the local community. Discussing these metrics with local provider sets the stage for mutual recognition of independence.
Access to continuing education is an essential part of forming a cleft team (Davis et al. 1999). Providers, both local and foreign, need open access to fellowships, scholarships, and educational materials. This provision also protects the community receiving care by helping ensure that the providers are exposed to and hence are practicing the most modern approaches to treatment.
Another essential factor needed to make the cleft work sustainable is enhancing local volunteerism – enabling the community to feel engaged with the work being done by the cleft team (Sturmer and Kampmeier 2003). Local volunteerism leads to the establishment of local conferences, fund-raisers, and activities around the care of cleft patients. Integrating the cleft team into the society through local volunteerism will ultimately promote sustainability.
Foreign providers developing cleft care teams in developing countries must be sensitive to the ethical issues regarding the conduct of research (Buchanan and Miller 2006). While research is an important process that drives innovation and helps to obtain sustainable funding for the cleft team, it can also compromise the safety and privacy of patients (Hyder et al. 2004). Therefore, researchers must work closely with the local providers to ensure that patients are fully protected. Research must receive institutional review board (IRB) approval from both local and foreign institutions. Additionally, all participants must sign a consent form and have the freedom to leave a study at any time and to ensure that all patients are aware of their rights in a research setting.
Research also serves as a tool for implementing primary care for cleft patients. In order to institute preventative care, researchers around the globe must work together, using the World Health Organization’s method of following specified Millennium Development Goals (Mossey et al. 2011). A collaborative research approach will improve outcomes for patients with clefts throughout the world.
42.12 Cleft Care in the West Bank, Palestine
In 2006, cleft practitioners from the University of North Carolina (UNC) at Chapel Hill Department began traveling to the West Bank and Gaza to provide cleft care. Surgical trips have been scheduled twice a year. While foreign surgeons are not available, local practitioners provide follow-up to previous patients and schedule future patients.
Practitioners who have participated in these trips have worked with local practitioners in order to build a sustainable cleft team. Visiting practitioners have trained local surgeons to perform cleft care. From the outset of these trips, the decision was made not to perform any surgery without the presence of a local surgeon; this has ensured that every case is the opportunity to further the training of local practitioners. Since 2009, local surgeons have increasingly performed independent repair of cleft palates; since 2010, cleft lip surgery has been done by local practitioners.
Local providers have been given opportunities to participate in international conferences on cleft care, attend educational seminars, and in the conduct of IRB-approved research. The Palestinian Cleft Society, established in 2007, now with exclusively Palestinian leadership, assists in overseeing the care of Palestinian children with clefts throughout Palestine (Fig. 42.2).
2009 Annual Palestinian Cleft Society Meeting banner (Ramallah, Palestine). The title of the conference was “Dental and Orthodontic Needs of Children with Clefts”
In order to make cleft care in Palestine, and throughout the world, sustainable and globally collaborative, this nascent cleft care team has partnered with both nongovernmental and governmental organizations like the Palestinian Ministry of Health, the Smile Train, Operation Smile, and ReSurge.