Pilot program will train family caregivers of those with spinal muscular atrophy

Cure SMA, a national non-profit organization dedicated to the treatment and cure of spinal muscular atrophy (SMA), has awarded BAYADA Pediatrics, a specialty of BAYADA Home Health Care, with a $30,000 clinical care grant. The funding will allow BAYADA to develop a pilot study involving hands-on, simulation-based training to help family members care for the complex medical needs of their children with SMA.

SMA is a neuromuscular disease that robs people of physical strength by affecting the motor nerve cells in the spinal cord, taking away the ability to walk, eat, or breathe. It is the number one genetic cause of death for infants. SMA may be diagnosed in infancy, childhood, the teen years, or later. The disease impacts each person differently; however, brain function and sense of touch are never affected.

Deborah Boroughs, RN, MSN, director of special programs for BAYADA Pediatrics, wrote the grant and will serve as principal investigator for the pilot. “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 United States,” said Boroughs. “Data confirms that repetitive caregiver education improves survival, decreases frequency and lengths of hospital stays, and decreases complications and costs for these children.”

The family-caregiver training will take place in BAYADA’s electronic simulation labs, which include computer software and life-like mannequins that simulate medical emergencies.

“BAYADA was the first home health care agency to offer simulation lab training to their nurses,” said Heather Kuzura, RN, director of pediatric simulation operations for BAYADA. “We are so proud to partner with Cure SMA on this pilot study. The funding will allow us to pioneer simulation lab training with the parents of our clients, giving them the confidence they need to handle emergency medical situations.”

Born with SMA, Jack Freedman, 19, has received nursing care from BAYADA at home and school for most of his life.  “When the nurses head home and I am Jack’s caregiver, I want to be sure that I know how to handle an emergency,” said Jack’s father, Al Freedman.  “Thanks to the training I received in BAYADA’s simulation lab, when Jack had a seizure, I was better prepared to respond. I got his BiPAP mask on him faster and I was able to get him the oxygen he needed,” he explained.  “If I hadn’t acted quickly, the seizure could have led to more serious complications for Jack.”

According to Cure SMA, nowhere in the Unites States is there a program for continuing education for family caregivers of children with SMA.  “We anticipate that ongoing and convenient family caregiver training will empower the caregivers of children with SMA with greater confidence and skills, and will lead to improved clinical outcomes that enhance and extend the lives of children with this disease,” said Kenneth Hobby, president of Cure SMA.

At the conclusion of the 12-month pilot, BAYADA will identify family concerns, skill, and confidence levels pre and post-training.  “The different perspectives of the family caregivers should yield important information for tailoring future trainings to the individual needs of the families,” said Boroughs.

Since 1984, Cure SMA has invested $57 million in research that has led to improved treatment and quality of life for people with SMA.  Each year, scientists and physicians representing some of the world’s most prestigious institutions submit grant proposals to Cure SMA. This year, BAYADA Home Health Care was the only home health care agency to be awarded grant funding.

“I am so pleased that BAYADA took the initiative to apply for this grant. Parents like me will appreciate training that helps us to keep our children safe,” said Freedman.  “I feel lucky that Jack receives his care from a home health care agency that offers me such specialized support.”

BAYADA Pediatrics provides in-home nursing to children with complex medical and developmental needs, including tracheostomy and ventilator care.  Nursing is available up to 24-hours a day for children from birth through adolescence.

To learn more about SMA, visit www.curesma.org.  For more information on pediatric home health care, visit www.bayada.com/pediatrics.

Founded in 1975 by J. Mark Baiada, BAYADA Home Health Care provides nursing, rehabilitative, therapeutic, hospice, and assistive care services to children, adults, and seniors in the comfort of their homes. Headquartered in Moorestown, NJ, BAYADA employs more than 19,000 nurses, home health aides, therapists, medical social workers, and other home health care professionals who serve their communities in 22 states from more than 290 offices. For more information, visit www.bayada.com.

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