Caring for children with congenital heart defects is one of the most complex endeavors in pediatric medicine. However, hospitals in developing countries often lack access to the extensive resources and infrastructure required for pediatric cardiovascular surgery and peri-operative care.
But the need for pediatric congenital heart defect care is just as great in these nations as in high-resource settings. As Jason Thornton, RN, director of nursing patient services of Boston Children’s Hospital’s Cardiac Intensive Care Unit (CICU), points out, “As far as the statistics are concerned, the burden of disease is the same all over the world.”
Through on-site missions and initiatives like the International Quality Improvement Collaborative for Congenital Heart Surgery in Developing World Countries (IQIC), Thornton and many others in the Heart Center—including Patricia Hickey, PhD, RN, FAAN, Boston Children’s vice president for cardiovascular and critical care services—are helping to create sustainable, high-quality pediatric heart surgery programs at hospitals in developing countries.
Program development efforts generally center on missions—site visits that assess local resources, provide training and work with local teams to care for the most critically ill children. Depending on local resource levels, a mission will include critical care nurses and specialists, surgeons, technical or support staff and maybe more.
During a mission, the team screens patients (often from all over the host country), operates on those in greatest need and tries to arrange for others to receive care in nations near their home country, such as Israel, South Africa, the United Kingdom or the U.S.
Missions are also an opportunity to train local staff about infection control, nutritional support and other aspects of care. The IQIC—which currently connects 31 centers in 16 countries—complements on-site efforts through webinar-based education on topics related to teambased practice, safe operative practices and advanced nursing.
There is no one-size-fits-all approach to program development, as existing personnel and infrastructure vary greatly from nation to nation. In some, a surgical program must be built from scratch. When CICU nurse Beverly Small, RN, went to a hospital in Ghana, her team was shown a bare operating room: no lights, no tables, no anesthesia equipment, etc.
“We had to bring or arrange for the donation of all of the equipment and materials necessary to conduct surgery and provide peri- and post-operative care,” she recalls.
Some nations already have surgical programs that operate on relatively simple defects and wish to expand their capabilities to care for more complex cases. Such was the case of a hospital Thornton has worked with for four years in El Salvador. “They should be self-sustaining next year,” he says.
Hickey, Small and Thornton cite retention of trained staff, particularly nursing staff, as a key challenge in program development. Financial support is also a concern. While organizational sponsors may cover initial missions and training efforts, eventually a program must transition to a paid care model. However, a nation may not have a payer system that covers pediatric cardiovascular care.
Regardless of the starting point and obstacles, though, the end goal is the same: to help create self-sustaining programs and generate support for continued improvements. “Every mission is a pilot project to show hospitals and governments the value of pediatric cardiovascular surgery,” Thornton notes. “The overall impact should be that more children can access the surgery they need.”