Goals and Objectives

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).

BackgroundNewborn hearing screening (NHS) is a multifaceted system of education, screening, diagnosis , referral , treatment, care management, and ongoing evaluation of the effectiveness of all components.

Successful newborn screening systems rely on the collection, sharing and integration of data among the family, clinical care providers, and public health programs.

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

Data collection• Descriptive, qualitative data about the health

beliefs and behaviors regarding utilization of NHS systems were collected using a Group Level Assessment (GLA) model

• 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…”)

AcknowledgementsOur 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.

Next StepsBased 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.

Results

Leadership Education in Neurodevelopmental and related Disabilities (LEND) ProgramThe Division of Developmental and Behavioral Pediatrics

Cincinnati Children's Hospital Medical Center The University of Cincinnati University Center for Excellence in Developmental Disabilities

Needs Assessment Group for Newborn Hearing Screening (NHS) SystemsKelly Kamimura-Nishimura, MD; Sara DiStefano, B.A.; Mirella Rhad; Lisa Hunter, PhD; Lisa Vaughn, PhD; Susan Wiley, MD

Methods• 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

• A non-human subjects IRB proposal was approved for this participatory research project

• Other policy partners include:

• 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

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 process5. Multiple NHS system gaps.

[Figure 1] Process Steps in GLA

References1. 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

[Figure 2] Themes developed during

GLA

Step Seven: Action

Step Six: Selecting

Step Five: Understanding

Step Four: Reflecting

Step Three: Appreciating

Step Two: Generating

Step One: Climate Setting

Group Level Assessment (GLA)

Families at CenterParticipation

CommunicationEducationPartnership

NHS System Gaps Complex system

Lack of standard of care Lack of global awareness

Communication gaps Inconsistent messages High cost to society

ConsistencyStandard of

CareMessagePaperwork

Communication

Public awarenessOwnershipPartnersResources

Emotional FactorsFear

EducationMotivationCulture