Parents of kids with complex medical needs have a lot on their plates. Many of their children are sent home from the hospital with feeding tubes, ventilators, tracheotomy tubes, and other medical implements. These kids might also have seizures or other life-threatening conditions. Although hospitals offer training, many families still feel ill-equipped to deal with the challenges and emergencies that might arise in the course of daily home care. Recognizing the need for more real-life type training for parents, the New Jersey home-care agency Bayada Home Health Care has started using childlike mannequins to simulate situations that might arise while caring for a medically fragile child.
With the help of a grant from Cure SMA (spinal muscular atrophy), Bayada was able to train 11 parents in 2015, and they plan to train at least 100 more during 2016. Using a doll that can blink, has a pulse, whose chest rises and falls, whose lips turn blue to simulate cyanosis, and who can make vomiting, gagging, and bowel sounds, the Bayada team can create a number of scenarios that parents might encounter at home.
Families who have participated in the simulations have found it quite useful, especially for individuals like grandparents who are caregivers but weren't initially trained by the hospital. Erin White, mom to a 16-month old with a feeding tube who gets oxygen through a tracheotomy, says she was pleased that her parents, also caregivers for Erin's daughter, participated in the Bayada training.
Maria Carmen Diaz, a pediatric emergency-medicine physician, likes the simulators because parents rarely get a chance to practice what to do when things go wrong. "[The simulation] is their chance to make mistakes," Diaz says.
I think these simulators are wonderful resources for parents of kids with complex medical needs, and I'm hopeful that this idea catches on so more families across the country can benefit for simulator training. In the meantime, what sort of training have you gotten to help care for your children with complex medical needs? Was it enough or do you wish there was more offered in your area? We'd love to hear about what is or is not working for your families in terms of training and how that helps you better take care of your kids with special needs.