2023 Early Hearing Detection & Intervention Conference
March 5-7, 2023 • Cincinnati, OH
DUKE ENERGY CONVENTION CENTER
Looking through the Yellow Pages…: Experiences of hearing parents navigating childhood hearing loss
Access to language and a robust communication system is important for the cognitive, linguistic, and social-emotional development of all children. deaf/Deaf and Hard-of-Hearing (d/DHH) children encounter particular challenges to language access, as the majority are born to hearing parents who rarely have experience with hearing loss. These parents rely on outside sources for information and guidance as they navigate important decisions that impact their child’s future. This study explored three aspects of experiences encountered by hearing parents with a d/DHH child: emotional experiences after hearing loss identification, barriers to early and adequate language exposure, and facilitators of early and adequate language exposure. The hearing parents of 18 d/DHH children from across the US each participated in a qualitative, semi-structured interview. Purposive sampling included families with diverse communication approaches that they adapted over time. At the time of parent interviews, the children’s ages ranged from 6-41 years. Data collection occurred over the span of one year, and transcripts were analyzed using a thematic analysis approach. The study’s interview design allowed for rich data collection that supported deep exploration of parental perspectives. A central emotional theme identified expectations set by healthcare providers as “not setting-up parents for success.” Common themes of barrier experiences included the decentralization of services and stigma surrounding communication-related decisions. One family noted resorting to “looking through the Yellow Pages to find an audiologist” due to the lack of initial guidance that they received. Themes identified about facilitative experiences included peer support (parent-to-parent interactions), having a trusted central service provider, and prior engagement with d/DHH communities; “having the advantage of the insight from Deaf adults is worth its weight in gold." Parent perspectives are critical to assess existing programs and inform new interventions to support families with d/DHH children.
- Describe some of the emotional experiences of hearing parents after learning of their child’s hearing loss.
- Identify barriers to early language access that hearing parents of a d/DHH child experience in the US.
- Identify facilitators of early language access that hearing parents of a d/DHH child experience in the US.
Poster:
3420032_15530SydneyLoria.pdf
Presenter: Steven Barnett
Steven Barnett MD is a family physician researcher and is Director of the Rochester Prevention Research Center (RPRC): National Center for Deaf Health Research (NCDHR), a CDC-funded prevention research center. The mission of RPRC/NCDHR is to promote health and prevent disease with deaf sign language users and people with hearing loss, their families and communities, through community based participatory research.
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Sydney Loria is a current student at the University of Rochester School of Medicine. She graduated from Colgate University with a Bachelor of Arts degree in Chemistry in 2018. She is pursuing a medical career in Pediatrics with a specific interest in serving children with hearing loss and will graduate as a member of the Deaf Health Pathway.
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No relevant financial relationship exist.
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No relevant nonfinancial relationship exist.
Logan Worley is a current medical student at the University of Rochester School of Medicine & Dentistry where he is a member of the Deaf Health Pathway. He graduated with a Bachelor of Arts in Chemistry from the University of Rochester. He has plans of pursuing a career in Interventional Radiology.
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Tori Valachovic is a current medical student at the University of Rochester School of Medicine & Dentistry where she is a member of the Deaf Health Pathway. She graduated with a Bachelor of Science in Biochemistry and Global Health Studies from Allegheny College. She has plans of pursuing a career in reproductive health and primary care.
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