BAYADA Pediatrics Director of Special Program Development Deb Boroughs, RN, MSN, authored an article that was published in the national online medical journal, Children. The article, ”An Evaluation of a Continuing Education Program for Family Caregivers of Ventilator-Dependent Children with Spinal Muscular Atrophy (SMA)”, appears in a special issue on complex health and care needs. BAYADA Pediatrics, a specialty practice of BAYADA Home Health Care, provides nursing care at home and school for children with catastrophic medical needs.

The article reflected on a 2015 clinical care grant awarded to BAYADA Pediatrics by the non-profit organization Cure SMA, to study and analyze the use of continuing education and training for family caregivers of ventilator-dependent children diagnosed with spinal muscular atrophy (SMA). The grant funding allowed BAYADA to develop a pilot study to help family members care for the complex medical needs of their children. The study involved 11 children with SMA between the ages of six months and 18 years. The participants represented multiple ethnicities and included parents, grandparents, and foster parents.

The family caregiver training took place in BAYADA’s electronic simulation lab, which uses computerized, life-like manikins to simulate medical emergencies. The training gave participants a chance to learn in a safe, controlled environment.

According to Boroughs, over the past 20 years, caregiver error has resulted in a consistent 18-20 percent of the mortality of all ventilator-dependent children cared for at home in the US.  Data confirms that repetitive caregiver education improves survival, decreases frequency and lengths of hospital stays, and decreases complications and costs for these children.

“At the conclusion of the 12-month pilot study, the training was found to be highly beneficial for the participants, who all reported a greater level of confidence in their ability to respond effectively to emergencies,” said Boroughs. “Several reported that they were able to respond to tracheostomy emergencies at home without having to go to the emergency room, and attributed their successful emergency response to their recent preparation in the simulation lab.”

Children is an international, open access journal dedicated to a streamlined, yet scientifically rigorous, dissemination of peer-reviewed science related to childhood health and disease in developed and developing countries.

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