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The problem of identifying persons with disabilities

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The problem of identifying persons with disabilities the importance of questionnaire design Angela Me, Chief Social and Demographic Statistics Section – PowerPoint PPT presentation

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Title: The problem of identifying persons with disabilities


1
The problem of identifying persons with
disabilities the importance of questionnaire
design
  • Angela Me, Chief Social and Demographic
    Statistics Section

2
Challenge
  • How to measure a wider experience of disability
    through a limited number of questions?

3
Design an instrument to identify the defined
population with disability
  • The difficult part is
  • To logically convert/translate objectives into
    measurement instruments and to link definitions
    with questions

4
Design an instrument to identify the defined
population with disabilities - a Census Example
  • Definition
  • Any restriction or lack (resulting from an
    impairment) of ability to perform an activity in
    the manner or within the range considered normal
    for a human being
  • Question
  • Is there anybody in the household who is disabled?

5
Definition-measurement instrument
BFS limitations
Paralyzed
..
Deaf
Activity limitations
..
6
Design an instrument to identify the defined
population with disabilities - a Census Example
  • Despite a definition based on activity
    limitations, the questions identified only
    persons with most severe impairments
  • 2.5

7
From theory to practice
  • Estimates of prevalence of disability are highly
    sensitive to the measures used

8
Measurement Issues
  • Design of the study
  • Method of data collection
  • Question design (wording, place, length, )
  • Interview process
  • interviewer effect
  • Respondent effect
  • Socio-cultural Determinants

9
US Survey Example
  • The following questions and results were obtained
    in an American survey

'Yes'
Have you ever heard the word AFROHELIA? (no such
word!)
8
Have you ever heard of the famous writer, John
Woodson? (no such writer!) Have you ever heard
of the Midwestern Life Magazine? (no such
magazine!) Do you recall that, as a good citizen
you voted last December in the special election
for your state representative? (no election!)
16 25
33
Have you ever heard of the Taft-Pepper Bill
concerning veteran's housing (no such bill!)
53
10
Example Australian Survey
  • Average number of sex partners reported
  • By women who were watched as they filled in their
    survey answers 2.6
  • By women who knew they were completely anonymous
    3.4
  • By women who thought they were attached to a lie
    detector 4.4

Sydney Morning Herald, August 31, 2003
11
Wording
  • The most detailed disability survey, using a
    carefully designed and relatively complete set of
    questions covering a wide range of topics, is
    limited when the initial questions used to
    identify the persons with disability is poorly
    designed

12
Developing instruments to identify persons with
disabilities
  • Disability is a dynamic complex related to
  • Individual attributes
  • Environment
  • Time
  • Two persons with the same impairment may have a
    different perception of disability

13
Issues that we need to consider
  • Particular attention is needed to measure
    disability through an interview process
  • People may be unwilling to talk about their
    problems
  • Difficulty in defining what is meant by
    disability and its various aspects
  • Stigma

14
Issues that we need to consider
  • In an interview process
  • Easier to measure activity limitations
    (day-to-day activities) and participation

15
Developing instruments to identify the complexity
of disability
  • Requirement
  • Multiple questions to set context, clarify
    terminology, define multiple domains
  • Resource availability
  • Short questions

16
Developing instruments to identify the complexity
of disability
  • Long instruments/modules
  • High number of questions, more opportunities to
    capture the different dimensions, intensity
  • Short instrument/modules
  • 1-5 questions to identify persons with
    disabilities
  • Careful design of the question(s) to make sure
    that all persons with disabilities that we want
    to identify can indeed be properly identified

17
What defines a good instrument
  • The instrument measures the concept it is
    supposed to measure (Validity-Accuracy)
  • Repeated measurements of the same instruments
    give the same results (Reliability-Precision)

18
Design an instrument to identify the target
population- A Census Example
  • Definition
  • Any restriction or lack (resulting from an
    impairment) of ability to perform an activity in
    the manner or within the range considered normal
    for a human being
  • Question
  • Is there anybody in the household who is disabled?

19
An example U.K. Census 1991
  • Do you have any long-standing illness, health
    problem or handicap which limits your daily
    activities or the work you can do? Include
    problems which are due to old age

20
Conditions that effect the output of a question
  • Wording
  • Context
  • Self/Proxy
  • Response categories
  • Mode of data collection
  • Method of data collection
  • Overall survey topics
  • Survey sponsor

21
Wording what does affect comprehension?
  • Ambiguous syntax
  • Complicated syntax
  • Unfamiliar terms
  • Vague concepts
  • Assumptions about respondents knowledge

22
Wording
  • Language
  • Clear
  • Unambiguous
  • Simple
  • Terms such as long-term, disabilities, handicaps
    are viewed as extremely negative and tend to
    underreport disabilities (Langlois, 2001)

23
2000 US Census
  • Because of a physical, mental, or emotional
    condition lasting 6 months or more, does this
    person have any difficulty in doing any of the
    following activities
  • d. Working at a job or business?
  • Multiple health domains (explicit enumeration)
  • Duration
  • Difficulty
  • capacity
  • participation
  • Working

24
Question components for a short question
  • Preamble
  • Health condition (as cause)
  • Duration (long/short term disability?)
  • ICF domain
  • Functioning
  • Activities
  • Participation

25
Question components for a short question
  • Keep it relevant and valid but SIMPLE
  • If possible split the different components of the
    measure into different questions

26
Question components for a short question
  • Introduction make the respondent think about the
    outputs of an health condition and set the
    duration (conditions that last for 3 months, 6
    months, 12 months, )
  • Depending on the domain we want to identify
  • Do you have difficulties walking?
  • Do you have difficulties concentrating?
  • Do you have difficulties participating in daily
    activities
  • ..

27
Question components for a short question
  • Questions based on activities and participation
    rather than impairments provide a broader view of
    disability and they facilitate the
    identification of persons with disabilities by
    providing a more simple and natural language

28
Response process judgment and response
formulation
  • Evaluation of retrieved information
  • Perception of accuracy
  • Motivation
  • Evaluation of response options
  • Communication of response

29
Response categories
  • Response categories set the context of the
    question
  • Avoid to force the respondent to identify
    him/herself with a socially-defined label
    (stigma)
  • Scale Response instead of a dichotomy
  • None/A little/A lot
  • Yes, sometimes/Yes, often/No

30
Response categories
  • It has been proven that scaled responses improve
    the respondents ability to report having
    disabilities (Statistics Canada, Austrian Bureau
    of Statistics, Research in the USA)
  • If the respondent can not choose among multiple
    dimensions, he/she is likely to misreport his/her
    disability status
  • Disability is not a yes/no phenomenon but rather
    a status that varies on a continuum in terms of
    intensity and time

31
Mode of data collection
  • Self reported or Proxy?
  • Avoid if possible proxy responses
  • The disability process relates to the
    individuals experience and can be accurately
    described only by the individual him/her self

32
Type of question
  • Avoid household-based questions (Is there anybody
    in the household who has difficulties walking?)
  • Use person-based question (Do you have
    difficulties walking?)
  • It has been proven that person-based questions
    identify more persons with functional limitations
    (USA, UN)

33
Context
  • Place of the question in the questionnaire
  • Example disability and economic characteristics
    questions
  • Introduction to the question
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