Transcript Evaluating an EHDI System: Parent Survey Project

Evaluating an EHDI System:
Parent Survey Project
2005 Early Hearing Detection and
Intervention Conference
March 2005
Atlanta, Georgia
Funding Source
Centers for Disease Control and
Prevention with Massachusetts
(UR3/CCU118857-03) and Colorado
(UR3/CCU818868-04) under PA 00076Early Hearing Detection and Intervention
(EHDI) Tracking, Research, and
Integration with Other Newborn Screening
Programs
Project Awards
State Health Department EHDI Programs
Massachusetts Childhood Hearing Data
System
Colorado Newborn Evaluation Screening and
Tracking
Population of data begins with electronic birth
certificate in both states
includes demographic, risk indicator, and
diagnostic information
Project Overview
Literature Review
Exploratory Study
Two main questions
What are the levels of families’ satisfaction
and anxiety associated with the EHDI
process?
What factors affect families satisfaction levels
with the EHDI process?
Family Involvement
Families are the primary stakeholders
Colorado and Massachusetts included parents
in each phase of development of the study
Families reviewed and approved study
questions
Instrumental in developing hypotheses
after analysis of the preliminary results
Support provided to parents throughout
the study process when requested
Objectives
Conduct a pilot study of families’ satisfaction
and anxiety levels
Determine the levels of families’ satisfaction and
anxiety
Assess whether or not a child’s hearing status
affects the levels of satisfaction
Examine other factors affecting the levels of
satisfaction
Revise the three survey tools based on pilot
Goals
Pilot Survey of Families’ Satisfaction with the
EHDI Process
Pilot study that can be used by other states to
evaluate the effectiveness of their EHDI Project
Contribute to the national EHDI Goals of
providing effective family-centered services
Identify strengths and weaknesses in state EHDI
systems
Instruments Developed
Invitation letter
Three surveys (passed screen, passed
out-patient, and diagnosed with hearing
loss)
Translations of all documents into
Spanish, including back translation to
ensure cultural competency
State specific questions added at the end
of surveys
Protocol Summary
Pilot Study (Massachusetts and Colorado)
Families whose children passed an initial
screen (group 1)
Families whose infant referred on initial
screen, but passed out-patient (group 2)
Families with infants who are identified with
permanent hearing loss (group 3)
Design
Pool of questions from other studies, including
Families Issues Committee
MA and CO, with technical assistance from CDC,
modified questions and developed surveys
Surveys coded and can be linked with state
EHDI systems
Stratified random sample
over-sampled minority populations
increases analytical capacity for subgroups
Surveys and Project Period
Distributed by mail
Group 1: 1,200 sent
 born January 1, 2004 - July 1, 2004
Group 2: 1,200 sent
born January 1, 2004 - July 1, 2004
 Group 3: 400 sent
 born January 1, 2002 - April 30, 2004
Follow-up telephone calls performed for group 3
only
Response rate approximately 25% for all 3
groups
Parents Concerns
We live in a rural area and have to wait long
periods of time to see audiologists and the ENT.
We were given very mixed messages at the
hospital at the time of screening. There needs
to be improved training on how to talk with
parents.
There needs to be more advocacy for insurance
companies to cover at least some of the
expenses for hearing aids.
Parents should be present for the screening.
Positive Feedback
from Parents
Thank you for having the newborn hearing test.
My son’s result led to re-testing and enrolling in
EI. Your process is working great.
I am grateful for the screening program. My
son only has hearing loss in one ear so if he was
never screened we would not know he has a
hearing loss and would have missed out on EI.
We wish all states approved this law. All babies
deserve this early start.
Next Steps
Amend program protocols to incorporate
feedback from families
Analyze and publish the results
Refine survey instruments
Make surveys available to states and
territories
Investigators and
Collaborators
 Vickie Thomson, MA, Colorado Infant Hearing Program
 Janet DesGeorge, Families for Hands and Voices
 Nancy Wilber, EdD, Massachusetts Department of Public
Health
 Janet Farrell, BA, MA Newborn Hearing Screening
Program
 Chia-Ling Penny Liu, Sc.D., MA Newborn Hearing
Screening
 Sarah Stone, BBA, MA Newborn Hearing Screening
 Jessica MacNeil, MA, MPH, Newborn Hearing Screening