Delivering Screening Results: What Parents Want Janet DesGeorges Colorado Families for Hands & Voices Cami Geilenfeldt Iowa Hands & Voices.

Delivering Screening Results:What Parents Want

Janet DesGeorgesColorado Families for Hands & Voices

Cami GeilenfeldtIowa 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 re-screen since this test is designed to scare parents!”

A Parent’s Wishlist - Screening• 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!• 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….• “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!

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

“Act as if what you do makes a difference – It does.” – William James

Resources

www.babyhearing.orgwww.handsandvoices.orgwww.colorado.edu/slhs/mdncwww.infanthearing.org

More links from these sights