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Internationally Comparable General Disability Measures. Barbara M. Altman National Center for Health Statistics U.S.A. Session Objective. Explain how the questions were developed Understand the limited choices associated with developing census questions

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Internationally comparable general disability measures l.jpg

Internationally Comparable General Disability Measures

Barbara M. Altman

National Center for Health Statistics

U.S.A.

September 19-20, 2005 Rio de Janeiro, Brazil


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Session Objective

  • Explain how the questions were developed

  • Understand the limited choices associated with developing census questions

  • Understand the product that results from the question set

September 19-20, 2005 Rio de Janeiro, Brazil


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Key Components Involved in Development of Questions

  • Purpose of data collection in a census context

  • Conceptual domains relevant to the measurement purpose

  • Operationalization of domains to provide measurement tools

September 19-20, 2005 Rio de Janeiro, Brazil


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Selection of purpose/s

3 major classes of purposes at aggregate level

  • Service Provision

  • Monitoring functioning in the population

  • Assess equalization of opportunities

    2 criteria for selection of a purpose

  • Relevance

  • Feasibility

September 19-20, 2005 Rio de Janeiro, Brazil


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Purpose: Service provision

  • Seeks to identify those with specific needs, usually the most serious problems

  • Requires detailed information about the person and the environment

  • Influenced by the organization and structure of service organizations within a particular culture

September 19-20, 2005 Rio de Janeiro, Brazil


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Purpose: Monitoring functioning in the population

  • Seeks to identify all those with activity or participation limitation

  • Response comparability problematic since participation is culturally and environmentally determined

Population reporting work limitation

September 19-20, 2005 Rio de Janeiro, Brazil


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Purpose: Equalization of opportunities

  • Seeks to identify all those at greater risk than the general population for limitations in activity or participation

  • Disability as a demographic

% Employed

September 19-20, 2005 Rio de Janeiro, Brazil


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Selecting Primary Purpose

  • All 3 purposes were accepted as valid

  • Equalization of opportunity was identified as the primary purpose of concern

  • Decision made to develop questions to meet this purpose

  • Monitoring the level of functioning was seen as a secondary purpose

September 19-20, 2005 Rio de Janeiro, Brazil


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Source of Concepts for Measurement: ICF Model

Health Condition

(disorder or disease)

Body Functions & Structure

Activity

Participation

Environmental Factors

Personal Factors

Source: ICIDH-2, 1999

September 19-20, 2005 Rio de Janeiro, Brazil


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Moving from concept to measurement

  • ICF as the conceptual model

    • Common point of reference

    • Common vocabulary

    • Does not provide measurement questions or a way to measure the concepts

September 19-20, 2005 Rio de Janeiro, Brazil


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Matching Purpose with Concept

  • In order to address this purpose, we need to start by identifying persons who are at greater riskthan the general population of experiencing restrictions in participating in role activities in the absence of any accommodation

  • The source of our conceptual starting point is drawn from one of the primary domains of the ICF

September 19-20, 2005 Rio de Janeiro, Brazil


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Selecting the Concept to Measure: The Body

  • Body Function and Body Structure

    • Identifies type of impairment

    • Impairments do not necessarily reflect levels of capacity or performance of the person

    • They locate the anatomical part and the physiological functioning

    • Person is not necessarily “at risk”

    • We chose not to use this concept for our purpose

September 19-20, 2005 Rio de Janeiro, Brazil


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Selecting the Concept to Measure: Participation

  • Participation – involvement in a life situation

    • Represent problems an individual may have being involved or integrated into their community

    • Involves the coordination of both physical and cognitive functioning to accomplish multiple tasks within and environment.

    • Is too culturally bound to serve our purpose.

September 19-20, 2005 Rio de Janeiro, Brazil


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Selecting the Concept to Measure: Activity

  • Activity – the execution of an action or simple task

    • Activity is the deliberate execution of an action (walking) or task (dressing)

    • Activities are building blocks of participation

    • Activity limitations are a good and basic identifier of ‘risk’ of limitations in participation in culturally defined roles.

September 19-20, 2005 Rio de Janeiro, Brazil


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Locating Risk in the ICF Model

Health Condition

ACTIVITY

Body Functions & Structure

Participation

Environmental Factors

Personal Factors

Source: ICIDH-2, 1999

September 19-20, 2005 Rio de Janeiro, Brazil


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Levels of Measurement Necessary to Capture Activity and Participation

Mobility, seeing, hearing, learning

Level 1

Willful Action

Bathing, dressing, making meals, laundry

Specific Tasks

Level 2

Visiting with friends, going out to dinner

Individual Organized Activity

Level 3

Working at a job, being a parent, citizenship roles

Cultural Role Participation

Level 4

Level of Complexity

Type of Measure

Measure Examples

September 19-20, 2005 Rio de Janeiro, Brazil


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Measurement of equalization of opportunities Participation

  • Locate the definition of disability at the most basic level of activity/participation

  • This level is associated with the ability or inability to carry out basic functions at the level of the whole person (i.e. walking, climbing stairs, lifting packages, seeing a friend across the room)

September 19-20, 2005 Rio de Janeiro, Brazil


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Possible types of questions Participation

  • Questions that measure various domains of functioning such as mobility, cognition, sensory functions, etc.

  • A qualifier would need to ascertain that the action was accomplished without human or mechanical assistance

September 19-20, 2005 Rio de Janeiro, Brazil


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Mobility Participation

Walking

Climbing stairs

Bending or stooping

Reaching or lifting

Using hands

Sensory

Seeing

Hearing

Communicating

Understanding

Speaking

Cognitive functions

Learning

Remembering

Making decisions

Concentrating

Emotional functioning

Interpersonal interactions

Psychological well-being

Possible Question Choices

September 19-20, 2005 Rio de Janeiro, Brazil


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Criteria for Inclusion of Domains Participation

  • Cross cultural comparability

  • Suitability for self-report

  • Parsimony

  • Validity across various methodological modes

September 19-20, 2005 Rio de Janeiro, Brazil


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Number of Domains Selected Participation

  • Workgroup in agreement that Walking, Seeing and Cognitive functioning are core domains to be included

  • Earlier discussions have indicated that 3-4 questions are the maximum available in many censuses

  • Limitations on number of domains a function of space and mode – do we want to prioritize a domain list so that questions are available as space and other restrictions are relaxed?

September 19-20, 2005 Rio de Janeiro, Brazil


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Draft questions for Censuses Participation(general disability measure)

  • Do you have difficulty seeing even if wearing glasses?

  • Do you have difficulty hearing even if using a hearing aid?

  • Do you have difficulty walking or climbing stairs?

  • Do you have difficulty remembering or concentrating?

  • Do you have difficulty with (self-care such as) washing all over or dressing?

  • Because of a physical, mental, or emotional health condition, do you have difficulty communicating (for example understanding others or others understanding you)?

    a) No - no difficulty c) Yes - a lot of difficulty

    b) Yes - some difficulty d) Cannot do at all

September 19-20, 2005 Rio de Janeiro, Brazil


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Decision Elements Participation

  • Introductory clause

  • Response options

  • Use of a time qualifier

  • Use or non-use of assistive devices

September 19-20, 2005 Rio de Janeiro, Brazil


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What We are Not Identifying Participation

  • Are we screening or making estimates?

  • Screening spreads the net widely – attempts to reduce false negatives by accepting false positives.

  • Estimates are more focused on specific areas and should be more reliable.

  • We are seeking to represent a continuum of experience in an either/or context. We can’t represent the total continuum.

September 19-20, 2005 Rio de Janeiro, Brazil


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Meeting Products and Information Participation

  • Executive summary of meetings, presentations, and papers posted on the Washington Group website:

    • http://www.cdc.gov/nchs/citygroup.htm

  • Publication of key papers in a special issue of Research in Social Science and Disability due this Fall

September 19-20, 2005 Rio de Janeiro, Brazil


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Willful action - Participationreflects the individual’s will to carry out basic volitional bodily operations at the level of the organism (whole person); deliberate use of basic senses and body actions


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Specific tasks - ParticipationThe execution of a group of willful actions by an individual. It is an indicator of a series of related or more complicated actions necessary to accomplish an objective


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Organized activity - Participationthe accomplishment of a variety of specific tasks and willful actions in order to complete an activity that is socially recognized or defined in a culture; requires some form of interaction with others


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Role participation - Participation an individual’s involvement in performing recognized cultural roles


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