Parents’ Guide to Hearing
Loss En Español
Claudia Gaffney, MPH
Early Hearing Detection and Intervention (EHDI)
March 2007
Centers for Disease Control and Prevention
National Center on Birth Defects
and Developmental Disabilities
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Guide for Families of Children
with Hearing Loss
Culturally appropriate
Spanish language
tool for Hispanic
families of children
with hearing loss
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Guide for Families of Children
with Hearing Loss: What we did
Final product
External feedback
Material development (second draft)
Internal feedback
Translation of material into English
Material development (fist draft)
Research
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Research

Literature review:
– Hispanics are the nation’s largest minority
– High fertility rates for Hispanic women
– 25% of children receiving special services
for deaf and hard of hearing are Hispanic
– 72% of first generation or foreign-born
Latinos are Spanish dominant
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Research

Teleconference with professionals:
– Programs, services and materials available in
Spanish
Some services available in both languages
 Bilingual facilitators
 Brochures with program website and toll free #
 Too difficult to determine the content

– Common issues among Spanish speaking
families
Learning sign language
 Immigration issues

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Research

Teleconference with professionals:
– Useful materials and information






EHDI website translated
Custom translated letters to be sent to parents
Audio/visual piece for low literacy families
Address both social and medical issues
Explain how hearing loss will affect their lives
Identify stages and resources at the various stages
– Preferred formats of materials
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
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Tool kit for professionals with information in
Spanish for parents
Both Spanish and English versions
Research: Parental Focus Groups
Albuquerque
Aug 30, 2005
Date
Participants 1 father, 7 mothers
Moderator
PN
Recruitment New Mexico EHDI coordinator,
Atlanta
Sep 10, 2005
1 father, 8 mothers
PN
Albuquerque School for the deaf
Georgia EHDI coordinator,
Georgia Pines
Transcript
2 note takers
Audio recorder, 2 note takers
Incentives
Food, money and caregiver
Food, money, caregiver,
transportation
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Research: Drafts
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Research:
Focus group with New Mexico parents
– Diagnosis
Varied with place of birth
– Parent-physician communication
Professional interpreter provided by hospital,
Family members, Tele-interpreters
– Parent-child communication
Child is learning faster than parents
Family signs
Children interact more with parents after getting
services
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Research:
Focus group with New Mexico parents
– Reactions to materials

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
They understand now (that they have a child with
hearing loss) what “perdida auditiva” (hearing loss)
means.
Include questions to engage the audience such as
“Do you know if your child can hear?”
Include pictures
– Favorite design and title


Blue is the best color
Important to have the image of a whole and happy
family
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Research:
Focus group with New Mexico parents
– Additional content
Information about schools, both regular and special
Advantages and disadvantages of each type of school
Ways to integrate the whole family
Institutions, organizations, specialists
Glossary in both Spanish and English
Note: No mention was made of the various communication
options. It would seem that parents think that there is only
one option to communicate with their children with hearing
loss: sign language
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Research:
Focus group with Georgia parents
– Diagnosis
Children that were born in U.S were diagnosed
right after birth or within the first year
– Parent-physician communication
interpreter provided by early intervention
institution, family members, office staff
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Research:
Focus group with Georgia parents
– Parent-child communication
Spanish at home, but they also teach English words
to their children
Children learn English at school, so parents have to
learn English
Children can get confused if they are taught 2
languages
Some doctors do not recommend teaching sign
language
4 parents were learning American sign language
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Research:
Focu group with Georgia parents
– Reactions to materials
Title of the brochure more important that any image
presented.
Distribute brochure in supermarkets (Kroger),
schools and physician’s offices
– Favorite design and title
Blue
Like the whole family being present
Important to have a child in the picture
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Research:
Focus group with Georgia parents
– Additional content
Names and contact information of experts
Milestones for children with hearing loss
Ways to involve the family
Follow-up at home of what children learn in the
program
Organizations and resources (for no residents)
Glossary (it would help to learn English)
Communication options
Causes of hearing loss
Pictures and drawings
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Material Development

Hispanic family’s story (with tips) – 5 pages
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7 fact sheets
– Parts of the ear
– Doctors and professionals
– Technology (hearing aids, cochlear implants, FM
system, others)
– Resources (Part C – Early Intervention)
– How to communicate with your newborn
– National organizations
– Communication options
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Glossary
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Internal feedback

CDC-EHDI Team

CDC-BSHE Team

CDC in Spanish
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Material Development
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External Feedback

Teleconference with EHDI Spanish-speaking
professionals

Teleconference with EHDI professionals

National Alliance for Hispanic Health
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External Feedback: Quotes
9 telephone interviews with parents in
5 different states
 “Telling a story of what happened to somebody
that’s very similar to what’s happened to me.”
 “Having the kind of information you’re providing is
very helpful, because people and doctors ask you if
you have any questions, and you don’t know
enough to ask a question, or the words and terms
to explain what you mean. This is going to help me
ask more questions”
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External Feedback: Quotes (2)
 “The language is the type of Spanish that I
understand very well. It’s the kind of words that I’m
used to hearing, my own kind of Spanish…”
 “The important thing about the drawing is that you
see a happy family, that looks normal and upbeat,
with the satisfaction that they are doing all they can
to make things better. The family looks like they
are Latin, because of the darker skin and dark hair,
that is more identifiable than those with light hair.”
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Final Product

Tool kit for professionals that includes:
– Introductory letter explaining the materials and
encouraging providers to add their own local
resources
– Translation of the materials into English (just for
professional’s reference, available only at the CDCEHDI website)
– Pocket folder designed to hold the fact sheets inside
its back pocket that includes:
5 pages story (with tips)
7 fact sheets
Glossary
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For more information or to order copies of
this product please visit the CDC- Early
Hearing Detection and Intervention
program website at
www.cdc.gov/ncbddd/ehdi
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