Many people, including clinicians, have an image of a child on a ventilator as being bedbound, inert, and not engaged in the real world—a misperception that Sarah Sobotka, MD, MSCP, is striving to change. “There is a belief that these children are all severely disabled, when, in fact, many can go to school, be integrated at home with their families, and eventually get off the ventilator,” she says. But too often, children on mechanical ventilation linger in the hospital for extended periods, disrupting their attachment to parents and peers and restricting learning and development.
Sobotka has numerous research projects in the works to help kids on mechanical ventilation avoid prolonged hospitalizations. This year, she and co-researchers are describing for the first time the wide diversity of specialists who take care of children on mechanical ventilation across the country. “Care of these children is being delivered in a heterogeneous fashion, which makes it complicated to standardize care,” she says. Through a series of national surveys, she hopes to identify evidence-based best practices for this population and understand how to overcome the barriers to discharging kids to home. “Standard discharge practices have recently been described, but there is precious little evidence to support them,” she says.
By quantifying this problem and demonstrating the national crisis for this population, we can awaken interest in creating policy change.
~ Sarah Sobotka, MD, MSCP
One obstacle nearly all providers agree upon is the inadequate supply of home nurses to care for kids on mechanical ventilation. “By quantifying this problem and demonstrating the national crisis for this population, we can awaken interest in creating policy change,” says Sobotka. In other research, she is interviewing home care nurses to discover potential solutions to increasing the workforce and improving the quality of home care for these children. She is also embarking on a project to complete developmental testing on children at home with mechanical ventilation. “The developmental trajectories of these children have not been described, and we have many reasons to believe that they are more optimistic than many presume,” she says.