2024 Early Hearing Detection & Intervention Conference
March 17-19, 2024 • Denver, CO
| Partnering with families of deaf/hard-of-hearing children to develop a family-driven research agenda
Partnering with families of deaf/hard-of-hearing children to develop a family-driven research agenda
Parents and family members of deaf and hard-of-hearing (DHH) children have long been active in advocating for services and resources for their children. Family-led organizations have been established and partnerships with national organizations have been forged for the purpose of supporting the unique needs of DHH children. Moreover, there is a history of researchers who focus on DHH children of involving parents of DHH children in the research process, for example, as parent navigators. However, this kind of parental involvement in research is different from recruiting parents into research studies as subjects, but as partners in the research process (e.g., developing research questions, giving input on, and working together to collect data, participating in disseminating findings). The current project is a capacity building effort that has been funded through the Patient-Centered Outcomes Research Institute (PCORI). The project expands on previous family engagement efforts by partnering with parents of DHH children for the purpose of developing a family-driven research agenda. This presentation will describe: (1) the development and composition of a family research council, (2) the training process to develop the council’s knowledge of how research works, (3) methods for generating and prioritizing topics, (4) evaluation, and (5) lessons learned.
- Describe the purpose of involving parents of DHH children in the research process.
- Describe topics prioritized by the family research council.
- Describe lessons learned from this project.
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Presenters/Authors
Carrie Davenport
(Primary Presenter,Author,Co-Author), The Ohio State University College of Medicine, carrietdavenport@gmail.com;
Carrie Davenport, Ph.D., is a Postdoctoral Researcher in the Department of Otolaryngology at The Ohio State University Wexner Medical Center. Carrie is a teacher of the deaf by training with a Master's degree in Family-Centered Early Education from Gallaudet University. She earned her doctorate in special education at OSU in 2017. Prior to entering the PhD program at OSU, she was the Early Childhood Consultant for the Center for Outreach Services at the Ohio School for the Deaf. Carrie is a founding Board member of Ohio Hands & Voices. Her research interests include parental self-efficacy, parent-to-parent support, and parent-infant interaction. She is especially interested in building academic-community partnerships with families with deaf/hard-of-hearing children and other stakeholders.
ASHA DISCLOSURE:
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No relevant financial relationship exists.
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No relevant nonfinancial relationship exists.
AAA DISCLOSURE:
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No relevant financial relationship exists.
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No relevant nonfinancial relationship exists.
Ursula Findlen
(Co-Presenter), Nationwide Children's Hospital, ursula.findlen@nationwidechildrens.org;
Ursula M. Findlen, Ph.D., is the Director of Audiology Research in the Division of Clinical Therapies- Audiology Department at Nationwide Children’s Hospital and an Assistant Professor-Clinical at The Ohio State University College of Medicine, Department of Otolaryngology- Head and Neck Surgery. Dr. Findlen engages in clinical practice and research endeavors related to pediatric (re)habilitative audiology, particularly in regards to a multidisciplinary team approach to family-centered care. Her research interests include infant diagnostics and improving outcomes of children with hearing loss through systematic quality improvement and population health endeavors.
ASHA DISCLOSURE:
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• Receives Grants for Independent contractor from Advanced Bionics, LLC.
• Receives Grants for Independent contractor from Decibel Therapeutics.
• Receives Salary for Employment from Nationwide Children's Hospital.
• Receives Salary for Employment from The Ohio State University College of Medicine.
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No relevant nonfinancial relationship exists.
AAA DISCLOSURE:
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Financial relationship with Advanced Bionics, LLC (research grant)
Decibel Therapeutics (research grant
Nationwide Children's Hospital (employment)
The Ohio Statue University College of Medicine (employment).
Nature: Research grant support
Employment.
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No relevant nonfinancial relationship exists.
Tina Pudelski
(Co-Presenter), NA, tina.pudelski@gmail.com;
Tina Pudelski is the mother of two teenage daughters, including Caelan, her oldest daughter, that was identified as deaf through her newborn hearing screening. During early intervention, Tina and her husband were given the opportunity to attend the EHDI conference in 2013, and through that experience she realized the importance of the EHDI system and became an advocate for her daughter and others that were in the same position. Over the last ten years, she has become increasingly involved in statewide programs and organizations that help families connect and advocate for their children and themselves. Tina is currently board president of Ohio Hands & Voices.
ASHA DISCLOSURE:
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No relevant financial relationship exists.
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No relevant nonfinancial relationship exists.
AAA DISCLOSURE:
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No relevant financial relationship exists.
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No relevant nonfinancial relationship exists.
Irina Castellanos
(Co-Author), Indiana University School of Medicine, icastell@iu.edu;
Irina Castellanos, PhD is an Assistant Professor and Philip Holton Scholar in the Department of Otolaryngology - Head and Neck Surgery at Indiana University School of Medicine. Dr. Castellanos received her Ph.D. in Developmental Science from Florida International University, where she was trained in multisensory perception. She then completed a postdoctoral fellowship at Indiana University School of Medicine, where she focused on how neurocognitive systems are impacted by a period of early auditory deprivation in children who use cochlear implants. Dr. Castellanos’ research seeks to understand the dynamic interplay between the brain, body, and environment, and focuses on three areas of research involving the development of: (1) emotional and behavioral regulation, (2) conceptual thinking and reasoning, and (3) embodied visual attention during early language learning.
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Lisa Vaughn
(Co-Author), 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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Ann McAlearney
(Co-Author), The Ohio State University College of Medicine, Ann.McAlearney@osumc.edu;
Ann Scheck McAlearney, ScD, MS, is Associate Dean for Health Services Research, Distinguished Professor of Family and Community Medicine, and Executive Director of CATALYST, the Center for the Advancement of Team Science, Analytics, and Systems Thinking in Health Services and Implementation Science Research in the College of Medicine (COM) at The Ohio State University (OSU). She has over 30 years of health services research experience during which she has been actively involved in both performing research and disseminating research results to academic and practitioner audiences. Dr. McAlearney is internationally known for her expertise in both qualitative and mixed methods analyses, and has been continuously funded for over 20 years. She has authored over 350 peer-reviewed publications, 11 books/edited books and more than 100 book chapters. Dr. McAlearney received her undergraduate and graduate degrees from Stanford University and Harvard University’s School of Public Health.
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