CAN YOU DO THIS INTERVIEW?

Methods for Determining if a Proxy Respondent is Needed

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

Goals 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

Self Response Self Response

Usually desirable

Not always possible

Usually desirable

Not always possible

Why Not? Why Not?

Physical or cognitive barriers on the part of the respondent

Resource deficit on the part of the data collector

Physical or cognitive barriers on the part of the respondent

Resource deficit on the part of the data collector

Alternatives 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

The Big Challenge 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

Methods 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

Structured Assessments Not Designed for this Purpose

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)

Example of a Specially Designed Structured Assessment

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

Advantages and Disadvantages of Interviewer Judgment

Advantages and Disadvantages of Interviewer Judgment

Well trainedExperiencedSavvy

May not use the same standards

Advantages and Disadvantages of Structured Assessment

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

Structured and Unstructured Methods in an Interview Context

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

Percentage

Different Methods Produce Dramatic Differences Proxy Use by Condition

Different Methods Produce Dramatic Differences Proxy Use by Condition

2 71 9

9 1 1

2 3

1 1

9 0

3 6

2 5 2 5

0

2 0

4 0

6 0

8 0

1 0 0

O v e r a l l P h y s i c a l M e n t a lI l l n e s s

M R / D D O t h e r

3 Q u e s t i o n s S t r i n g

Percentage

Proxy Use by Age of Sampled PersonProxy Use by Age of Sampled Person

2 7

1 9

4 7

4 2

2 8

1 7 1 9

1 2 1 4 1 3

0

2 0

4 0

6 0

O v e r a l l 1 8 - 2 9 3 0 - 3 9 4 0 - 4 9 5 0 +

3 Q u e s t i o n s S t r i n g

Percentage

Proxy Use by Race and Ethnicity of Sampled Person

Proxy Use by Race and Ethnicity of Sampled Person

2 7

1 9

2 7

1 9

2 7

2 22 6

1 9

3 4

1 7

0

2 0

4 0

6 0

O v e r a l l W h i t e B l a c k O t h e r H i s p a n i c

3 Q u e s t i o n s S t r i n g

Percentage

Relationship of ProxyRelationship of Proxy

5 2

4 2

2 4

3 3

2 4 2 5

0

2 0

4 0

6 0

P a r e n t O t h e r R e l a t i v e N o n - R e l a t i v e

3 Q u e s t i o n s S t r i n g

Conclusion 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