1. CAN YOU DO THIS INTERVIEW? Methods for Determining if a Proxy Respondent is Needed Anne B. Ciemnecki, Kirsten Barrett, Karen A. CyBulski, Jason A. Markesich, Matt Sloan, and Debra L. Wright Anne B. Ciemnecki, Kirsten Barrett, Karen A. CyBulski, Jason A. Markesich, Matt Sloan, and Debra L. Wright

2. Goals Contribute to body of best practices for interviewing people with disabilities Develop a proxy determination tool that is... –Valid –Reliable –Objective –Maximizes self-response –Maximizes data quality –Protects human subjects –Does not create disparities –Does not create ill will Contribute to body of best practices for interviewing people with disabilities Develop a proxy determination tool that is... –Valid –Reliable –Objective –Maximizes self-response –Maximizes data quality –Protects human subjects –Does not create disparities –Does not create ill will

3. Self Response Usually desirable Not always possible Usually desirable Not always possible

4. Why Not? Physical or cognitive barriers on the part of the respondent Resource deficit on the part of the data collector

5. Alternatives Proxy response is appropriate when... -Sample member agrees to a proxy -Proxy is identified -Proxy is willing and able Non Response is appropriate when... -Proxy is not knowledgeable -Proxy cannot provide sampled respondent’s perspective Proxy response is appropriate when... -Sample member agrees to a proxy -Proxy is identified -Proxy is willing and able Non Response is appropriate when... -Proxy is not knowledgeable -Proxy cannot provide sampled respondent’s perspective

6. The Big Challenge Determining proxy need Balancing the right of self expression and data quality Determining proxy need Balancing the right of self expression and data quality

7. Methods Unstructured - Gatekeepers or caregivers alert interviewer - Sample members alert interviewer - Sample members give cues during introduction or interview Structured - Formal assessments of sample member’s ability - Programmed checks for inconsistent or missing data Unstructured - Gatekeepers or caregivers alert interviewer - Sample members alert interviewer - Sample members give cues during introduction or interview Structured - Formal assessments of sample member’s ability - Programmed checks for inconsistent or missing data

8. Structured Assessments Not Designed for this Purpose Mini-Mental State Examination (MMSE) Telephone Interview of Cognitive Status (TICS) Short Portable Mental Status Questionnaire (SPMSQ) Mini-Mental State Examination (MMSE) Telephone Interview of Cognitive Status (TICS) Short Portable Mental Status Questionnaire (SPMSQ)

9. Example of a Specially Designed Structured Assessment Please tell me in your own words, what the survey is about? When I say your taking part is completely voluntary, what does that mean to you? When I say that your answers will be kept confidential, what does that mean to you? Two tries/asked of sample members and proxies Please tell me in your own words, what the survey is about? When I say your taking part is completely voluntary, what does that mean to you? When I say that your answers will be kept confidential, what does that mean to you? Two tries/asked of sample members and proxies

10. Advantages and Disadvantages of Interviewer Judgment Well trained Experienced Savvy May not use the same standards

11. Advantages and Disadvantages of Structured Assessment Standardization Protection of human subjects Begins interview with a test May not be related to task at hand May produce false negatives More stringent test for those with disabilities

12. Structured and Unstructured Methods in an Interview Context Confirm identity, introduce survey, determine accommodations Conduct assessment Continue interview with proxy Interviewer judgment to allow proxy NO Interviewer judgment if assessment says need proxy Interviewer judgment to allow proxy Continue interview without proxy

13. Percentage Different Methods Produce Dramatic Differences Proxy Use by Condition

14. Percentage Proxy Use by Age of Sampled Person

15. Percentage Proxy Use by Race and Ethnicity of Sampled Person

16. Percentage Relationship of Proxy

17. Conclusion Standardizing methods to identify when a proxy is needed is not easy Need to balance data quality with the right to self- direction and self expression Different methods produce different rates and patterns of proxy usage Depends on survey and population We have a lot of work to do Standardizing methods to identify when a proxy is needed is not easy Need to balance data quality with the right to self- direction and self expression Different methods produce different rates and patterns of proxy usage Depends on survey and population We have a lot of work to do