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ABSTRACT INFORMATION
Title: 'Participatory Action Research With the Women, Infant and Children (WIC) Program for Improving Loss to Follow-up in Newborn Hearing Screening'
Track: 9 - Program Evaluation and Quality Improvement
Keyword(s): Loss to follow up, stakeholders, family focus
Learning Objectives:
  1. List advantages of participatory action research
  2. Describe ways to engage families and professionals in steering research needs
  3. List priorities for improving EHDI systems by collaborating with WIC programs

Abstract:

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.
Presentation: Monday_Clements_200_LisaHunter_1557.pdf

Handouts: Handout is not Available
CART: Topical Session 2- 1557.rtf
PRESENTER(S) / AUTHOR(S) INFORMATION
Lisa Hunter - Primary Presenter
Cincinnati Children's Hospital
     Credentials: PhD
      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.
      ASHA DISCLOSURE:

Financial - Receives Speaker for Teaching and speaking from Interacoustics, Inc.  

Nonfinancial - No relevant nonfinancial relationship exist.
Scott Wexelblatt - Author
Cincinnati Children's Hospital Medical Center
     Credentials: MD
     Other Affiliations: University of Cincinnati
      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.
Susan Wiley - Author
Cincinnati Children's Hospital Medical Center
     Credentials: M.D., Developmental Pediatrician, Professor
      Dr. Susan Wiley is a developmental pediatrician with expertise in children who are deaf/hard of hearing. She has many years of experience serving children with multiple disabilities.
Lisa Vaughn - Co-Presenter
Cincinnati Children's Hospital Medical Center
     Credentials: Ph.D.
      Lisa Vaughn is a professor of pediatrics at University of Cincinnati College of Medicine / Cincinnati Lisa Vaughn is a Professor of Pediatrics at Cincinnati Children's Hospital Medical Center. She shares her time between General and Community Pediatrics and the Department of Education and Training. She was previously associate professor of psychology at Brenau University where she was chair of the Psychology Department from 2000-2005.
      ASHA DISCLOSURE:

Financial - No relevant financial relationship exist.

Nonfinancial - No relevant nonfinancial relationship exist.
Laura Rolfes - Author
Cincinnati Children's Hospital Medical Center
     Credentials: B.A.
      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.
Erin Whitely - Co-Presenter
Cincinnati Children's Hospital Medicl Center
     Credentials: B.S.
      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.
      ASHA DISCLOSURE:

Financial -

Nonfinancial -
Ryan Uy - Co-Presenter
Cincinnati Children's Hospital Medical Center
     Credentials: M.D.
      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.
      ASHA DISCLOSURE:

Financial - No relevant financial relationship exist.

Nonfinancial - No relevant nonfinancial relationship exist.
Kimberly Walker - Author
Cincinnati Children's Hospital Medical Center
     Credentials: B.A.
      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.