18th ANNUAL EARLY HEARING DETECTION & INTERVENTION MEETING
March 3-5, 2019 • Chicago, IL

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3/09/2015  |   2:00 PM - 2:30 PM   |  Participatory Action Research With the Women, Infant and Children (WIC) Program for Improving Loss to Follow-up in Newborn Hearing Screening   |  Clements   |  9

Participatory Action Research With the Women, Infant and Children (WIC) Program for Improving Loss to Follow-up in Newborn Hearing Screening

Purpose: National data from 2011 indicated 35% lost to follow-up rate after a failed Newborn Hearing Screening (NHS). NHS is a multifaceted system of education, screening, diagnosis, referral, treatment, and ongoing evaluation of the effectiveness of all components. The purpose of this study was to identify barriers to follow-up after referred NHS through the perceptions among stakeholders in EHDI and WIC programs (i.e. parents, screeners, doctors, audiologists); to determine gaps in the EHDI system that contribute to loss to follow-up.; and to use participatory action research to generate qualitative data about health beliefs and behaviors regarding utilization of EHDI systems. Methods: Descriptive, qualitative data about the health beliefs and behaviors regarding utilization of EHDI systems were collected using a Group Level Assessment (GLA) model. Participants included small groups of 10-20 stakeholders used to gather information about the EHDI system in the Greater Cincinnati area. Participants were invited via already-established contacts within the EHDI and WIC programs including: parents, audiologists, physicians, speech-language pathologists, and birth hospitals. Results: Five major themes concerning what is needed for the improvement of the EHDI process emerged through the small group discussions: consideration of the various family emotional aspects of the EHDI process, consistency among the people involved in the EHDI process; improved communication among the different people involved in the EHDI process and the community, family involvement in the EHDI process, and EHDI system gaps. Conclusion: Based on the thoughts and ideas generated during the GLA, community members, health professionals, and academic partners will continue to come together and collaborate to generate plans and ideas that will help to compensate for the barriers that many individuals face in the EHDI process. Individual action groups were developed to work on areas of highest priority.

  • List advantages of participatory action research
  • Describe ways to engage families and professionals in steering research needs
  • List priorities for improving EHDI systems by collaborating with WIC programs

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Presenters/Authors

Lisa Hunter (Primary Presenter), Cincinnati Children's Hospital, lisa.hunter@cchmc.org;
Lisa Hunter is Scientific Director of Audiology and Professor at Cincinnati Children's Hospital Medical Center and the University of Cincinnati. She collaborates on a number of funded studies including evaluating physiologic factors associated with risks for hearing loss and understanding mechanisms for improved follow-up with newborn hearing screening in high risk famlies. She is a faculty with the Leadership Education in Neurodevelopmental and related Disabilities at Cincinnati Children's Hospital Medical Center.


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Scott Wexelblatt (Author), Cincinnati Children's Hospital Medical Center, scott.wexelblatt@cchmc.org;
Dr. Scott Wexelblatt is the Medical Director, Regional Newborn Services and Assistant Professor, University of Cincinnati Department of Pediatrics. He is a Co-PI on a study of newborn hearing screening and loss to follow-up.


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Susan Wiley (Author), Cincinnati Children's Hospital Medical Center, susan.wiley@cchmc.org;
Dr. Susan Wiley is a developmental pediatrician with extensive expertise in children who are deaf/hard of hearing. She has many years of experience serving children with multiple disabilities. Dr Wiley provides leadership and guidance to the National American Academy of Pediatrics, the Ohio Department of Health Early Hearing Detection and Intervention Program, the Ohio Center for Deaf-Blind Education, and the Outreach Center for Deafness and Blindness in the Ohio Center for Low Incidence.


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No relevant financial relationship exist.

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No relevant nonfinancial relationship exist.

Lisa Vaughn (Co-Presenter), Cincinnati Children’s Hospital Medical Center/ University of Cincinnati College of Medicine, lisa.vaughn@cchmc.org;
Dr. Lisa M. Vaughn is Professor of Pediatrics at University of Cincinnati College of Medicine/Cincinnati Children’s Hospital Medical Center with a joint appointment in the Educational Studies Community-Based Action Research PhD program at the University of Cincinnati. She is formally trained as a social psychologist. Dr. Vaughn has specific expertise in qualitative and participatory research methodologies and community-engaged research with a focus on health equity and wellbeing of vulnerable and immigrant families and youth. She has an impressive and established track record with a significant number of grant funded projects, over 100 refereed manuscripts and 200+ conference presentations, 5 books, and 18 book chapters. She has been involved in numerous projects either as a Principal or Co-Investigator that engage community stakeholders in the research process and use innovative, participatory methodologies.


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Laura Rolfes (Author), Cincinnati Children's Hospital Medical Center, laura.rolfes@cchmc.org;
Laura Rolfes is a Clinical Research Coordinator on studies of newborn hearing screening and follow-up at Cincinnati Children's Hospital. She provides rescreening for newborns. She has many years of experience in basic and clinical research.


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Erin Whitely (Co-Presenter), Cincinnati Children's Hospital Medicl Center, erin.whitely@cchmc.org;
Erin Whitely is a doctoral intern in audiology at Cincinnati Children's Hospital and a fellow in the Leadership in Neurodevelopmental Disabilities (LEND) at the University of Cincinnati. Erin is involved in research in newborn hearing follow-up as part of the LEND program.


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Ryan Uy (Co-Presenter), Cincinnati Children's Hospital Medical Center, ryan.uy@cchmc.org;
Ryan Uy is a pediatrician and developmental behavioral pediatrics medical fellow at Cincinnati Children's Hospital, and a fellow in the LEND program at the University of Cincinnati. Ryan is involved in research in newborn hearing screenign follow-up as a LEND fellow.


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Kimberly Walker (Author), Cincinnati Children's Hospital Medical Center, kimberly.walker@cchmc.org;
Kimberly Walker is a Family Advocacy fellow in the LEND program at Cincinnati Children's Hospital and the University of Cincinnati. She is doing research in Newborn Hearing follow-up as part of her LEND program.


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