Transcript What Parents Want

Delivering Screening Results:
What Parents Want
Janet DesGeorges
Colorado Families
for Hands & Voices
Cami Geilenfeldt
Iowa Hands & Voices
The Story of Late Identification
• Sara’s Story
• The Families in your communities……
What parents of late ID’d kids want
you to know!
• “We wish our child had been screened at
birth!”
• “We wish our child had been identified at
birth, we could have started appropriate
treatment - we grieve the wasted time that
went by before we knew”
• “Our child is delayed in language – if she had
been screened (identified), this might not be
the case.”
What parents of late ID’d kids want
you to know!
• “I always wonder what life would be like
for Brian if we had known at birth….I know
it would have made a difference.”
• “I look at families today who have children
who are doing so well, and wonder if all
the struggles we have had could have
been avoided.”
The Story of Early Identification
• Brady’s story
• The families in your communities…
What parents of early ID’d kids want you
to know!
• “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.”
• “Parent support was the best help!!”
CDC Parent Survey 2006
• Pilot Study (Massachusetts and Colorado)
– Funded by CDC
– OBJECTIVES: Conduct a pilot study of families’
satisfaction and anxiety levels
– 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)
Parents Concerns
• “Parents should be present for the screening.”
– (will parents be in the way? Make the screening more time
consuming, thus more expensive?)
• Parents should not just be given a card when their
baby fails but face to face contact with someone
who knows the system (in writing/in
person/available to answer questions)
• I wish they had offered me Immediate contact with
family (parent-to-parent) support”
• “All families should have access to hearing aids,
not just families who have Medicaid”
• “My physician told me not to go back for a rescreen since this test is designed to scare
parents!”
A Parent’s Wishlist - Screening
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The “in a perfect world” screener
More Information - not less
Put it in writing!
Consistency in the “system”
Families emotions - Finding the balance
between “panic” and “apathy”
…In a Perfect World
• The Screener
– Has basic knowledge about Screening
• What is screening? Why is it important? What does it mean if
the baby fails the hearing screening?
– Knows about hearing loss, Incidence, next steps,
– Competent in using equipment
– Trained in how to deliver information
• Scripting
• Has a basic awareness of outcomes of Early detection,
positive awareness of individuals who are deaf/hh.
• Cultural Competency
– Deaf parents
– Sets the ‘tone’ for parents in the EHDI process – “First
Impressions”
More Information, not less.
Put it in Writing!
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Start with consumer friendly brochure.
Statistics and research information
Understanding Risk Factors
Info. On types of Hearing Loss
Give a list of questions to parents which
they may want to ask the diagnosing
Audiologist. (CDC has one available)
• Info. From Parents to Parents
Where are Parents on the Map?
• Make Sure the whole process is explained
(screen, re-screen, diagnostics) – Know
the statistics
• Gives Parents the power of ‘follow-up’
– Parent ‘Roadmap’
– CO Guidelines, “Parent Checklist”
– Other states….
FAQ’s of parents going through the
screening process?
• If my child fails this screening, what are
the chances of hearing loss?
• How reliable is this test?
• Will it hurt my baby?
• How much is this going to cost?
• Do all babies in this country get
screened?
• What’s the point of screening now?
Consistency in the “System”
• Professional Collaboration and Education
- physicians, nurses, audiologists,
volunteers, screeners, Early Intervention
programs, parent organizations,
consumer organizations
• Statewide protocols and guidelines.
• Point of entry defined
• Start education at the prenatal level
The Journey for Families:
Balancing the Emotional process
• Too little information creates apathy
• Too much information creates panic
• The balance - Info. Increases through transitions
(screen, re-screen, diagnostics, early intervention)
-sensitivity to postpartum
-seriousness of hearing loss
-delivery of information - confident,
professional, knowledgeable
What We wish you hadn’t Said….
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“It’s probably just fluid in the middle ear”
“I know how you feel”
“Your baby has ‘failed’
“ I can’t relate to any of this. I had three perfectly
normal children”
• “Your child has a (profound, mild, moderate)
hearing loss”
What We wish you had said to us…..
• “Here’s a list of resources to call/contact”
• “Here’s some contact information of other families
who have been through this process”
• “You may want to talk to professionals who know
hearing loss. Here are some numbers.”
• “It’s too early to tell for sure” (the final outcome)
• “You are going to make it through this – just take
one step at a time”
What we want you to know about
having a child who is deaf or hard of
hearing
• “I want you to know that my child who is deaf is
the greatest gift I have ever received.”
• “The impact of hearing loss is real, yet it is not
hopeless”
• “We as a family are stronger because of this
journey.”
• “My child is…..an honor student….a soccer
player….a college graduate…..a champion
swimmer…..an actress….a viola player…..”
PARENT POWER
• Parent’s are the most
critical element in
helping create a
sustainable, quality EHDI
system that meets the
needs of the children and
families we serve!
“Act as if what you do makes a difference –
It does.” – William James
The need and right to communicate is the
most fundamental of human rights. To
deny it is to harm the human spirit; to
foster communication is to reveal all the
possibilities of life.
National Deaf Education Project, 2000
Resources
www.babyhearing.org
www.handsandvoices.org
www.colorado.edu/slhs/mdnc
www.infanthearing.org
More links from these sights