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.