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Needs Assessment Group for Newborn Hearing Screening (NHS) Systems Kelly Kamimura-Nishimura, MD; Sara DiStefano, B.A.; Mirella Rhad; Lisa Hunter, PhD; Lisa Vaughn, PhD; Susan Wiley, MD Leadership Education in Neurodevelopmental and related Disabilities (LEND) Program The Division of Developmental and Behavioral Pediatrics Cincinnati Children's Hospital Medical Center The University of Cincinnati University Center for Excellence in Developmental Disabilities Background Methods Data collection Newborn hearing screening (NHS) is a multifaceted system of education, screening, diagnosis , referral , treatment, care management, and ongoing evaluation of the effectiveness of all components. • Participants included a group of ~30 stakeholders used to gather information about the NHS system in Cincinnati and the surrounding suburbs • Participants included: parents, audiologists, physicians, speech-language pathologists, and birth hospitals • Descriptive, qualitative data about the health beliefs and behaviors regarding utilization of NHS systems were collected using a Group Level Assessment (GLA) model Successful newborn screening systems rely on the collection, sharing and integration of data among the family, clinical care providers, and public health programs. • A non-human subjects IRB proposal was approved for this participatory research project • Other policy partners include: 1 Although universal NHS has dramatically reduced the number of late-identified hearing loss in children, there are still barriers that prevent the timely follow-up of all babies. Barriers often cited are maternal education level, otitis media at the time of follow-up, degree of hearing loss, transportation, third party payers, limited access to providers, comorbid diagnosis , appointment wait times or scheduling issues in general, and pediatrician and midwives’ knowledge regarding the process. 2,3,4 • • • • • Ohio Maternal and Child Health - Regional Infant Hearing Program and Help me Grow Ohio Department of Health Women, Infant and Children (WIC) program, Hamilton County Ohio Valley Voices – Oral school for Deaf children St. Rita School for the Deaf NHS System Gaps Goals and Objectives Complex system Lack of standard of care 1. Identify barriers to follow-up after referred NHS through the perceptions amongst stakeholders (i.e. parents, screeners, doctors, nurses, audiologists, intervention specialists) 2. Determine gaps or weaknesses in the NHS system that contribute to loss to follow up. 3. To use participatory action research (PAR) to generate qualitative data about health beliefs and behaviors regarding utilization of NHS systems. 4. A Group Level Assessment (GLA) approach, which collects qualitative data systematically, was used in the study (Figure 1). Lack of global awareness Communication gaps Inconsistent messages • GLA involves bringing a large group of participants together to build a common data base through the identification of relevant needs and priorities • Participants’ thoughts and ideas were collected during a 2.5 hour group discussion. • Thirty prompt boards were utilized during this discussion (i.e. “The best thing about NHS is…”, “NHS is important because…”, “The most worrisome part of NHS is…”) [Figure 2] Themes developed during GLA High cost to society Five major themes (see Figure 2) emerged through the small group discussions: 1. The need to consider the various emotional aspects of NHS for families involved in the process 2. The need for consistency among all professionals involved in the NHS process 3. The need for better communication among those involved in the NHS process and the community 4. The need for family involvement in the process 5. Multiple NHS system gaps. Next Steps Based on the thoughts and ideas generated during the group level assessment, 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 NHS process. Individual action groups may be developed at a next meeting to begin work on most-needed areas. References Emotional Factors Families at Center Participation 1. Consistency Lloyd-Puryear MA, Brower A. Long-term follow-up in newborn screening: A systems approach for improving health outcomes. Genetics in Medicine Vol 12 (12): December 2010 Supplement. 2. Holte, L., et. al. Factors influencing follow-up to newborn hearing screening for infants who are hard of hearing. American Journal of Audiology vol (21). December 2012. 3. Goedert, M., et. al. Midwives' knowledge, attitudes, and practices related to NBHS. J Mideifery Women's Health. 2011 March ; 56(2): 147–153. 4. Moeller, M., et. al. Primary care physician's knowledge, attitudes and practices related to NBHS. Pediatrics. October 2006; 118(4): 1357-1370 Education Communication Standard of Care Motivation Education Message Partnership Paperwork Fear Culture Group Level Assessment (GLA) Results Step One: Climate Setting Acknowledgements Step Two: Generating Step Three: Appreciating Step Four: Reflecting Step Five: Understanding Step Six: Selecting Step Seven: Action [Figure 1] Process Steps in GLA Communication Public awareness Ownership Partners Resources Our thanks to all of our GLA stakeholders for their participation and insight. Additionally we would like to thank the Cincinnati Children’s Hospital LEND program for their willingness to assist in the GLA preparation.