Deaf People and Healthcare: Adapting CAHPS® to be Accessible for Sign Language Users

AHRQ 2008 Annual Conference

Slide Presentation from the AHRQ 2008 Annual Conference

On September 10, 2008, Stephen Barnett, made this presentation at the 2008 Annual Conference. Select to access the PowerPoint® presentation (460 KB; Plugin Software Help).

Slide 1

Deaf People and Healthcare: Adapting Consumer Assessment of Healthcare Providers and Systems (CAHPS®) to be Accessible for Sign Language Users

• Steven Barnett MD
  Department of Family Medicine
  University of Rochester

Slide 2

Outline

• Background.
• Work before my K.
• Work during my K.
• My research.
• Implications.

Slide 3

Career Development

• Goal:
  • To be a leading expert & independent researcher on the topic of health and healthcare with deaf people and their families.
• Project:
  • To adapt CAHPS® in order to collect data in sign language on healthcare experiences.

Slide 4

Why Deaf people?

• Cross-language/cross-cultural issues.
• Frequently overlooked minority population.
  • Health-related research.
• Family dynamics.
  • Healthcare.
• Environmental aspects of "disability."
• Highlights & challenges my assumptions.

Slide 5

Healthcare Issues

• Language.
• Literacy.
• Fluency.
• Fund of information.
• Mistrust.
• Family.

Slide 6

Research Issues

• Language.
• Literacy.
• Fluency.
• Fund of information.
• Mistrust.
• Family.
• Modality.
• Continuum.
• Institutional Review Board (IRB).
• Prior survey experience.

Slide 7

Before my K08

• Patient care (mostly deaf-related).
• Teaching (sometimes deaf-related).
• Research (sometimes deaf-related).

Slide 8

During my K08

• Patient care (mostly deaf-related).
• Teaching (often deaf-related).
• Research (mostly deaf-related).
• Dedicated time for career development.
  • Mentors.
  • Formal coursework/teaching.
  • National Center for Deaf Health Research (NCDHR).
• Flexibility.

Slide 9

Research

• Modality.
• Translation.

Slide 10

• Slide shows screen shot of opening screen for survey.
  • Photos of four models illustrating sign language are at top of page, with "CC" [closed caption] under each.
  • Larger photo beneath shows Barnett, also signing.
  • Text on page says: "My name is Patrick. You can touch on the other signers. You can pick a different signer at any time. When you are done: Touch next."

Slide 11

Basic Demographics

• Screen shot shows sign language survey:
  • Are you female or male?
    • A Female.
    • B Male.
• Screen shot shows "B" was chosen, so model in window signs, and text below reads, "You are a man."

Slide 12

Translation

Slide 13

Translation

• What is the highest grade or level of school that you have completed?
  1. ℑ   8th grade or less.
  2. ℑ   Some high school, but did not graduate.
  3. ℑ   High school graduate or general equivalency diploma (GED).
  4. ℑ   Some college or 2-year degree.
  5. ℑ   4-year college graduate.
  6. ℑ   More than 4-year college degree.

Slide 14

Translation

• Did you graduate high school or get your GED?
  • If Yes: After high school, did you go to college?
    • If Yes: What degree do you have?
  • If No: Did you go to high school?
    • If No: Did you finish 8th grade?
      • If No: Did you finish Kindergarten?
  • If Don't know: Did you go to high school?
    • If No: Did you finish 8th grade?
      • If No: Did you finish Kindergarten?

Slide 15

Translation

• In the last 12 months, did you phone this doctor's office with a medical question during regular office hours?

Slide 16

Implications

• Feedback to clinicians/systems.
• Feedback to patients/families.
• Feedback to public health & policymakers.
• Survey design.

Slide 17

Take Home Messages

• Career Development Awards are great.
• Deaf sign language users comprise understudied disparity populations.
• Community participatory research is essential to the survey adaptation process.

Slide 18

• Questions?
• Feedback?

Slide 19

• NCDHR is supported by Cooperative Agreement U48 DP000031 from Centers for Disease Control and Prevention (CDC). The contents of this presentation are solely the responsibility of the author and do not necessarily represent the official views of the CDC.
• Steven Barnett is supported by grant K08 HS15700 from the Agency for Healthcare Research and Quality.
• Thank you to my family, mentors, and everyone who has worked with me on these projects.

Slide 20

• Steven Barnett MD
  Family Medicine Research Programs
  1381 South Avenue
  Rochester, NY 14620
  Steven_Barnett@URMC.Rochester.edu
• National Center for Deaf Health Research
  Rochester Prevention Research Center
  University of Rochester
  www.urmc.edu/ncdhr
• Presented during the AHRQ 2008 Conference, "Office of Extramural Research, Education and Priority Populations (OEREP) Panel Session on Successful Career Development in Health Services Research", Bethesda, MD (September 10, 2008).