Parents’ Guide to Hearing Loss En Español

1. Parents’ Guide to Hearing Loss En Español Claudia Gaffney, MPH Early Hearing Detection and Intervention (EHDI) March 2007

2. Culturally appropriate Spanish language tool for Hispanic families of children with hearing loss Guide for Families of Children with Hearing Loss

3. 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

4. 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

5. 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

6. 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 • Tool kit for professionals with information in Spanish for parents • Both Spanish and English versions

7. Research: Parental Focus Groups

8. Research: Drafts

9. 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

10. Research: Focus group with New Mexico parents • Reactions to materials • 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

11. 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

12. 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

13. 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

14. 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

15. 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

16. Material Development • Hispanic family’s story (with tips) – 5 pages • 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 • Glossary

17. Internal feedback • CDC-EHDI Team • CDC-BSHE Team • CDC in Spanish

18. Material Development

19. External Feedback • Teleconference with EHDI Spanish-speaking professionals • Teleconference with EHDI professionals • National Alliance for Hispanic Health

20. 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”

21. 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.”

22. 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 CDC-EHDI website) • Pocket folder designed to hold the fact sheets inside its back pocket that includes: • 5 pages story (with tips) • 7 fact sheets • Glossary

23. 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

24. Questions???