ENTell News: Summer 2022
Patient Care & Research Spotlight: Improving the hospital-to-home transition for children with tracheostomies
The transition from the hospital to home can be intimidating for children with tracheostomies and their families. ENT nurse practitioner Laine DiNoto, NP, who leads the pediatric tracheostomy and home ventilator program at Golisano Children’s Hospital, is part of a multidisciplinary team of researchers who are addressing a nationwide gap in educational resources available for tracheostomy care.
At this year’s Pediatric Academic Societies (PAS) Meeting in April, DiNoto and pediatric ICU nurse Adrienne Frankel presented data from the perspective of caregivers in a poster that asks the question, “What are the Educational Needs and Challenges Experienced by Caregivers of Pediatric Patients with Tracheostomies?”
DiNoto says this is an underrepresented topic in the pediatric research field, and that too often, families do not have a strong voice in the development of trach education resources. URMC providers are aiming to change that trend.
“Tracheostomy education is grounded in quality and safety, and we need all voices heard in order to create stronger relationships and improved outcomes, not only in the hospital but at home,” DiNoto says.
Researchers surveyed and interviewed families whose kids had a tracheostomy procedure between 2015 and 2020. One of the most common scenarios that came up was caregivers not only having to learn about tracheostomy care themselves, but teach it to others in their household and their home nurses. While families do typically build confidence in their tracheostomy care abilities over time, DiNoto says URMC providers seek to help families feel as confident as possible when their child is being discharged.
DiNoto also stressed the importance of patient-centered language in educational materials. “Their child is not a patient first; they’re a child first,” she says.
With the insight gained from family interviews, DiNoto looks forward to developing new educational programs for staff and families, and hopes to establish a support group program for kids with tracheostomies and their families in our region to connect with one another.
Going the extra mile
We have been fortunate to support families in many other ways too. At Golisano’s annual Stroll for Strong Kids 5K and Walk in June, several URMC providers – among them, DiNoto and pediatric otolaryngologist John Faria, MD – walked in honor of patients with tracheostomies. The team fundraised more than $750 to help families purchase home supplies and equipment.
“There’s a disconnect between what patients need to safely care for their trach, and what insurance will provide,” DiNoto says. “We hope to supplement supplies for families to keep them safe and healthy at home.”
Supporting kids with tracheostomies requires a dedicated team of experts from multiple specialties, including otolaryngology, audiology and speech pathology. Trinity Cody is among the patients we’ve been able to help by placing and checking on her tracheostomy tube. Born premature at 27 weeks with a chronic lung disease, she spent more than 600 days being treated at Golisano. Her mother, Melissa Alcott, expressed gratitude for members of our team who provide care for this complex medical condition.
"They have always been a great support by answering questions, assisting when Trinity is sick, and making sure she has everything she needs," Alcott says. "Dr. Faria also placed her tubes in her ears and helped connect us with Audiology to find hearing aids that work best for her. He helped us find out about bone conduction hearing aids due to her very small ear canals."
Raising awareness
In May, the Otolaryngology department and several of our collaborators acknowledged Tracheostomy Awareness Month, which provides an opportunity to educate the public on this device and procedure. DiNoto says one of the most important things for people to know about tracheostomies is that the devices are not scary. In fact, it’s “an amazing device that allows people to live and thrive at home.”
“A trach tube allows someone to breathe, either because there is something in the way of their trachea, or because they need help from a ventilator,” DiNoto explains. “Having a trach alone does not imply there is any change to their development, intellect or ability to contribute to our world.”
Visit the Pediatric Tracheostomy & Home Ventilator Program’s website to learn more.