As a graduate student, I volunteered for a parent support event where I made connections with two mothers of children with severe-to-profound hearing loss. Their shared belief that all families could be resourceful, resilient, and competent motivated me and inspires me even now. This fortuitous encounter gave me a different perspective about what might affect outcomes for children who are Deaf/hard of hearing (D/hh) and made me curious to learn more about families.
Learning about what impacts outcomes of families of children who are D/hh requires us to look at the work we do through a different lens. It sends us in search of insights from different research streams and bodies of literature peripheral to hearing and language development. We are challenged to rethink what being a “good” pediatric audiologist means. It requires thoughtful consideration of what might positively change the story for children who are D/hh, acknowledging that it will take more than highly trained professionals.
Too many families find themselves struggling in the gap between the promise of early identification and desired outcomes.
Our early hearing, detection, and intervention (EHDI) systems continue to evolve and bring more families to our doors that say “yes” in response to newborn screening, timely diagnostics, and prompt referrals for services. Despite this evolution, too many families find themselves struggling in the gap between the promise of early identification and desired outcomes. Their struggle emphasizes that our skill sets are not “enough” and that families need and deserve more from us.
Meet Shara, Deon, and Javier from a typical day in clinic.
Five-month-old Shara came in for a follow-up. Her hearing aid data logging indicated limited wear time since the last visit. A conversation ensued about the importance of consistent use. Her mom shared that her boyfriend attacked her again, so it had been harder lately since moving to a shelter.
Then there’s Deon, who is mainstreamed at grade level in public schools and living with his grandmother. The summer before he started high school, his grandmother decided to move him to an American Sign Language (ASL) residential program in a different city. It was a surprising move because she had worked so hard to help him acquire spoken language skills. Her reasoning was that he would be safe. Several of his friends had already been arrested, and Deon had been caught skipping school a few times.
Two-year-old Javier and his mother are familiar faces in the clinic. They have weekly intervention sessions, arriving early and staying afterward in the waiting room. Javier’s mother said they were between apartments while she tried to get her documentation papers sorted, sleeping some nights in the car or sometime at a friend’s. Therapy days were a treat because Javier could play with all the toys and books in the clinic and get a free sack lunch.
Shara, Deon, and Javier were identified early, receive care from skilled pediatric audiologists, and have high-quality personal amplification. All three receive coverage through Medicaid, live with a caring adult, receive appropriate intervention services, and have opportunities to meet other families—what sounds like a sure recipe for success. However, all three families have a litany of factors unrelated to hearing status that will influence their long-term outcomes.
These nonmedical conditions in the environments where people are born, live, learn, work, play, and worship are defined as social determinants of health (SDOH) by the World Health Organization. SDOH are often grouped into five domains; see FIGURE 1.
These conditions shape daily life and can influence health equity positively and negatively. Examples include safe housing, transportation, access to nutritious food, and education.
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This content is an exclusive benefit for American Academy of Audiology members.
If you’re a member, log in and you’ll get immediate access.
If you’re not yet a member, you’ll be interested to know that joining not only gives you access to top-notch resources like this one, but also invitations to member-only events, inclusion in the member directory, participation in professional forums, and access to patient resources, tools, and continuing education. Join today!
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