The Pediatric Hearing Loss Mentorship Program at Mass Eye and Ear uses peer mentorship to help children with hearing loss reduce the stigma that’s often attached to hearing devices. Patient Eliot Ferrara-Brown shared his experience in the program. Watch the video above or click here for more information on the program.
Eliot didn’t know what life would be like growing up with a hearing device. To Eliot, a sixth grader from Salem, MA, the bone-anchored hearing aids he wore in both ears made him feel different. When classmates poked fun of his appearance, he found it hard to imagine getting older wearing them. That is, until he met Mark.
Mark is a college student who is Eliot’s peer mentor through the Mass Eye and Ear Pediatric Hearing Loss Mentorship Program. As Eliot’s mentor, Mark isn’t just someone who wears a hearing device; he’s a role model of what can be accomplished by wearing one.
The program was co-founded in October 2020 by Mass Eye and Ear clinicians Leila Mankarious, MD, a pediatric ENT surgeon and Allison Jones, LICSW, a clinical social worker, who had both witnessed families struggle to adopt hearing loss technology. By introducing pediatric patients to older hearing loss patients who led successful lives, she hoped to provide a tangible example of why devices should be worn.
Through the mentorship program, Eliot and Ryan meetup online once every few weeks to play Minecraft. The two spend hours talking about their favorite Marvel superheroes and sharing different video game strategies.
“It’s awesome to see someone who looks like me and looks really cool wearing a hearing device,” Eliot told Focus. “It makes me feel not so different after all.”
Unpacking the stigma
The Centers for Disease Control and Prevention (CDC) estimates that two-to-three out of every 1,000 children in America are born with a detectable level of hearing loss. Genetic defects are responsible for over half of the cases, and over a quarter are due to environmental factors such as maternal infections during pregnancy and complications after birth.
Since hearing loss affects a child’s ability to develop speech, language and social skills, clinicians recommend hearing devices as an early intervention method. Two of the most well-known devices are hearing aids and cochlear implants. Hearing aids help to amplify surrounding sound in mild to moderate cases, whereas cochlear implants provide electrical signals directly to the auditory nerve in more severe cases.
Both devices are fairly common among by children in the United States; the National Institute on Deafness and Other Communicable Disorders (NIDCD) reports that roughly 65,000 cochlear implants have been implanted in American children as of December 2019. However, despite its audiological benefits, these devices come with a social stigma that many children can find tough to shake. According to Dr. Mankarious, some children who wear hearing devices stop wearing them at around ages 11-13. The drop-off, she says, is often a result of harassment from peers about their appearance from wearing the devices.
“These younger kids, many of whom are in middle school, might be the only kids in their schools wearing a cochlear implant or hearing aid. Children see that they look different and that makes them feel different,” Dr. Mankarious explained. “But, if they have a role model to look up to who makes it look cool to wear a device, it normalizes the technology and helps them not to feel different anymore.”
Dr. Mankarious worked with Allison to launch the program last fall. Together, they recruited hearing-loss patients who wore devices, had graduated high school or college, and could serve as older role model for younger patients.
After interviewing each family over the phone, Allison and Dr. Mankarious matched mentors with mentees. Once a match had been made, an introduction was facilitated and families set up times for their children to meet.
A multifaceted mentorship program
The Pediatric Hearing Loss Mentorship Program was, in part, inspired by the model of support groups. But, unlike a typical 12-step program or grief group, the program offers a more casual, one-on-one connection for its participants. Mentors and mentees can meet however often they wish and are encouraged to be creative with their time.
Amid the COVID-19 pandemic, meetups have occurred over Zoom and video game streams, which has allowed mentors to showcase the technological capabilities of their hearing devices. To the amazement of the mentees, mentors offer lessons on how to connect devices with gaming consoles, or sync devices with personalized computers, using Bluetooth settings. In an era of online remote learning, these tips and tricks prove vital for success in school, too.
“Kids are seeing that looking different doesn’t matter when a device can help them accomplish so much,” Allison said. “It’s also providing them with a role model who isn’t letting hearing loss get in his or her way.”
The program is available to parents, too. Parents of mentors and mentees are paired with one another and can meet with one another however often they wish. According to Alison, it can be extremely difficult for a parent to learn their child has any level of hearing loss. They might doubt whether their child can attend college, get married, or take part in typical life activities. Parents who have seen their children successfully navigate hearing loss can serve as an invaluable resource to parents who are going through the same experience for the first time.
“For parents who are new to this whole experience, there’s something special about hearing, ‘It’s going to be okay’ from someone who isn’t a doctor, who isn’t a professional, but from someone who has been there and done that,” Allison said.
Now in his third month of the program, Eliot’s parents, Rachel and Matthew, have noticed the change in his demeanor and confidence. In fact, Eliot coordinates all of his meetings with Mark and enjoys a new hobby: writing letters to Marvel asking the company to renew its comics about Blue Ear, a superhero who uses a device for super-sonic hearing.
“He’s seeing a person who is cool, likes to play video games, loves comic books, and goes to college, all while wearing a hearing device,” Rachel said. “Having someone who looks like you and can show you how successful you can be by wearing a device makes all the difference in the world.”
As of May 2021, 12 families have signed up for the program and a total of 20 have been referred. Despite the program’s initial success, Dr. Mankarious sees plenty of ways for it to grow and flourish with more staffing and support.
The program even presents an opportunity to conduct future research on the social-emotional wellbeing of children with hearing loss. If enough families sign up, Dr. Mankarious would consider using patient-reported outcome surveys to evaluate a child’s quality of life before and after joining the program. The data would help clinicians better understand the role of a hearing device on a child’s psyche, and how to provide the proper support needed to overcome it.
“I want every mentee to believe that he or she can go to college or play sports, for example,” Dr. Mankarious said. “Our program is providing pediatric hearing loss patients with the sense that anything is possible, and it’s exciting to think of what can come next.”
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