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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 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’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! PARENT POWER
“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