2027 Early Hearing Detection & Intervention Conference
March 22-24, 2027 • Bellevue, WA
3/17/2026 | 9:40 AM - 10:10 AM | Understanding the Emotional Journey of Caregivers After Pediatric Hearing Loss Diagnosis: A Qualitative Study to Inform EHDI Systems | City Terrace 7
Understanding the Emotional Journey of Caregivers After Pediatric Hearing Loss Diagnosis: A Qualitative Study to Inform EHDI Systems
Early Hearing Detection and Intervention (EHDI) programs play a pivotal role in ensuring timely identification and support for children with hearing loss. While screening and diagnostic protocols are well established, greater emphasis is needed on strengthening family-centered practices within EHDI systems. Families navigating a new diagnosis often experience a range of emotions, uncertainty, and challenges accessing resources, underscoring the importance of structured emotional and educational support.
This session will explore findings from a qualitative study of caregivers, highlighting common emotional responses, the evolving role of support systems, and the importance of empathetic communication during the diagnostic process.
OBJECTIVES: The primary objective of this study was to examine the emotional experiences observed in caregivers of children with profound sensorineural hearing loss (PSNHL) with a focus on grief and related emotional processes following the initial diagnosis. METHODS: This qualitative interview study included caretakers of children aged three or younger with PSNHL. Semi structured interviews involved ten standardized questions exploring caregivers’ emotional and experiential responses. Interviews were transcribed, coded, and analyzed thematically to identify commonalities across participants. Interviews were concluded when the study reached coding saturation. RESULTS: Eleven caregivers, five males and six females, participated across ten interviews. Five participants were based in rural areas, and the remaining six were from urban or suburban areas. Most caregivers reported experiencing distressing emotions in response to their child’s diagnosis, though they did not explicitly use the term grief. For many caregivers, these difficult emotions gradually diminished over time with the help of healthcare providers, community resources, and family support following the diagnosis. CONCLUSION: This study highlights the complex emotional journey of caregivers following a child’s diagnosis of PSNHL.
Findings underscore the importance of timely, empathetic communication from physicians and the need for structured emotional and informational support for families.
- Participants will be able to describe the emotional experiences of caregivers following a child’s diagnosis of hearing loss and explain how these responses affect family engagement with EHDI services.
- Participants will be able to identify strategies for integrating emotional support, counseling, and peer networks into EHDI programs to make them more family-centered and culturally responsive.
- Participants will be able to evaluate models of parent support programs and stakeholder collaborations that foster strong partnerships between families, healthcare providers, educators, and state/national EHDI systems.
Presentation:
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Handouts:
Handout is not Available
Transcripts:
CART transcripts are NOT YET available, but will be posted shortly after the conference
Presenters/Authors
Robert Fuss
(Co-Author), UGA Undergraduate Student, rjohnfuss@gmail.com;
Robert is an undergraduate pre-med student at UGA. He completed an internship at Children's Healthcare of Atlanta in the Department of Otolaryngology and assisted with data collection and analysis for this project.
ASHA DISCLOSURE:
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Nonfinancial -
AAA DISCLOSURE:
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Akilah Heggs
(Primary Presenter), ARH Consulting, LLC, akilah.heggs@gmail.com;
Akilah Heggs, PhD, CCC-A is a licensed audiologist with 25 years of experience in pediatric hearing healthcare. She earned her PhD in Public Health from Georgia State University, an MS in Audiology from the University of Massachusetts–Amherst, and a BS from the University of Georgia. Dr. Heggs has served as Georgia’s Early Hearing Detection and Intervention (EHDI) Coordinator, Director of Programs and Clinical Services at the University of West Georgia, and Pediatric Audiology Coordinator for the LEND Program. Her work spans early intervention, policy, and interprofessional training to advance equitable care for children with hearing loss.
ASHA DISCLOSURE:
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No relevant financial relationship exists.
Nonfinancial -
No relevant nonfinancial relationship exists.
AAA DISCLOSURE:
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No relevant financial relationship exists.
Nonfinancial -
No relevant nonfinancial relationship exists.
Nandini Govil
(Author,Co-Author), Otolaryngology, Emory and Children's Healthcare of Atlanta, nandini.govil@emory.edu;
Nandini Govil, MD, MPH, joined Children’s Healthcare of Atlanta and Emory University in 2019. Dr. Govil is double board-certified in otolaryngology-head and neck surgery and complex pediatric otolaryngology. She currently serves as Co-Director of the Hearing Loss Program at Children’s and Clinical Research Director within the Division of Pediatric Otolaryngology.
ASHA DISCLOSURE:
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Nonfinancial -
AAA DISCLOSURE:
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