Proposed Content of Census Questions for International Use

1. Proposed Content of Census Questions for International Use WORKGROUP 1 Jennifer Madans National Center for Health Statistics

2. Barbara Altman Jeremiah Banda Alicia Bercovich Carlotta Besozzi Ken Black Emmanuelle Cambois Roberta Crialesi Elena DePalma Bothaina ElDeeb Ahmed Hussein Nenad Kostanjsek Renee Langlois Jennifer Madans Ros Madden Maria Martinho Angela Me Horst Posselt Elizabeth Rasch Malin Synneborn V.M. Tamhane Herman Van Oyen Romulo Virola Wen Xingyan Members of Workgroup 1

3. How We Got to This Point • To bring our new attendees up to speed and to review for members who attended our earlier meetings: • Our objective for this meeting • Our agreed purpose for census questions • Where census questions fit in the overall picture

4. Current Objective • Develop 2 to 3 sets of general questions for use in Censuses • Understand the limited choices associated with developing census questions • Understand the product that results from census questions

5. Brief Review: Purpose of a General Census Measure of Disability • In Brussels, (meeting 3) the Washington Group identified three possible major purposes of measuring disability in a census: • Provision of services • Monitoring the level of functioning in a population • *Equalization of opportunity*

6. 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 reflect this purpose. • Monitoring the level of functioning was seen as a secondary purpose.

7. Equalization of Opportunity • Equalization of opportunity is achieved when the ‘disabled’ and non-’disabled’ populations have the same rates of role participation in areas like education and employment.

8. 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 the ICF

9. Source of Concepts for Measurement is the ICF Model Health Condition Body Functions & Structure Activity Participation Environmental Factors Personal Factors Source: ICF, 2001

10. Leaving Disability Behind: Working with the Multiple Elements of Limitations in a Social Context • Disability is an umbrella term for impairments, activity limitations and participation restrictions. • Actually there are 6 conceptual areas that make up the dimensions of disability as identified in the ICF model: • Health condition • Body functions and structures • Activities • Participation • Environmental factors • Personal factors

11. Body function and body structures As related to the purpose of our measurement, the anatomical and physiological aspects of the impairment may or may not be the cause of the “at risk” condition. Identifies type of impairment These impairments do not necessarily reflect levels of capacity or performance of the person. They locate the anatomical part and the physiological functioning. We have chosen not to use this concept for our purpose Focusing in on the Area to Measure: The Body

12. Participation - involvement in a life situation As related to the purpose of measurement, participation is the outcome variable (not the risk) in which a person may or may not be involved. Represent problems an individual may have in life situations Involves the coordination of both physical and cognitive functioning to accomplish multiple tasks within an environment Is too culturally bound to serve our purpose Focusing on the Area to Measure: Participation

13. Activity - the execution of an action or simple task by an individual As related to the purpose of our measurement this area provides the best choices of classes of actions or tasks that when limitation exists can put the person “at risk”. 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 specified roles Focusing on the Area to Measure: Activity

14. Locating Risk in the ICF Model Health Condition ACTIVITY Body Functions & Structure Participation Environmental Factors Personal Factors Source: ICIDH-2, 1999

15. Locating Purpose in ICF Model: Developing our Measurement Model • The ICF classification maps the different conceptual constructs and domains of functioning and disability, it does not model the ‘process’. • It provides the conceptual building blocks for users who wish to create models and study different aspects of the process. • It also does not provide a way to measure the concepts since that will be influenced by the mode of observation used to identify the various concepts.

16. Model for Census Activity Participation

17. ICF Language and Measurement Language • The ICF model concepts are too general to provide indicators for individual questions, i.e. Activity can refer to many actions and simple tasks. • The ICF classification is too detailed to provide a basis for indicators in a census format. Each class would require a separate operationalization. • In the position paper presented in Brussels we also provided measurement language to serve as a tool to facilitate the operationalization process.

18. Operationalization: Intermediary Step Between Model Concepts, Classes and Measurement • Concept • Activity - the execution of a task or action by an individual • Operationalization • Willful action or use of basic senses and body actions, the ability or inability to purposefully control physical or sensory functions to accomplish an intention. Based on performance. • Performance or non-performance of simple, uncomplicated specific tasks • Involvement in an organized activity that requires some form of interaction with others • Role participation, which represents an individual’s belief that they perform enough of the willful actions, specific tasks and organized activities to claim s/he holds a certain social role.

19. Identifying the Population ‘At Risk’ • What representation of the real world will identify the ‘at risk’ population at the most basic levels so that cultural compatibility can be maximized? • Activity offers different domains that can identify the population. • Those domains vary in the amount of risk they identify. • There are a range of external factors that will affect risk • In Brussels we agreed to focus on a basic set of domains.

20. What We are Not Identifying • 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.

21. Limiting Concepts Based on Census Characteristics • To state the obvious, census space is limited, so it is useful to limit the conceptual areas we seek to measure. • Mode of data collection – phone, paper and pencil, in person interview – create different problems and restrictions both to number of questions and question format.

22. Assumptions about One Gold Standard • At our first meeting we agreed that disability is an umbrella term reflecting many facets of the process – therefore there is not one measure or number. • If there are gold standards of measurement for each of the various components or domains of disability we need to identify the gold standard that reflects our purpose. • Then, we need to approximate this standard with as few questions as possible, keeping in mind that there may not be a gold standard.

23. Examining the Components of the Problem: Questionnaire Elements • Introductory statement – length, simplicity, focus • Questions – number, breadth of coverage, language, complexity • Response categories – yes/no or scale

24. Introductory Statement • Serves as a guide to the respondent where to focus their considerations when answering the question. • Can contain reference to health problems as being the source of the ‘difficulty’, references to a time component related to the health problem, and/or reference to the use of assistance or assistive devices.

25. Question Topics • Based on our purpose, we have chosen to identify the ‘at risk’ population at the most basic activity level. • Which domains of activity should be represented? • What is the minimum to develop comparable data? Workgroup recommended 4 questions.

26. Criteria for Inclusion of Domains • Cross cultural comparability • Suitability for self-report • Parsimony • Validity across various methodological modes

27. Question Topics: Essential Domains • Walking • Seeing • Cognitive functioning • Additional domains suggested: • Hearing • Upper body functioning • Communicating

28. Response Categories • Main issue with responses is the number of categories. • Simplest is yes/no, however that does not allow for capturing degrees of difficulty. • Cultural compatibility a factor due to interpretation of qualifiers • If use of a scale is desired – what is defining concern, severity or frequency of problem.

29. Recommendations: Introductory Statement • Keep as short as possible if used

30. Recommendations: Questions • Do you have (serious) difficulty seeing or are you blind? • Do you have (serious) difficulty hearing or are you deaf? • Do you usually have (serious) difficulty walking or climbing steps? • Do you usually have (serious) difficulty remembering or concentrating?

31. Recommendations: Response Categories • Yes/No

32. Areas to Discuss • Introductory Statement • Wording • Scaled Responses • Number of Domains • Assistance and Assistive Devices

33. Discussion: Introductory Statement Issues • Issues raised by Workgroup: • Relate answers to health and mental health? • Include time element – 6 months, 3 months, long term or usually? • Include reference to assistance or aids, i.e. without any personal assistance or use of aids? • Does an introductory statement work in all modes?

34. Discussion: Wording Issues/ Scaled Responses • How to represent severity • Include serious in question thereby limiting responses to the more serious end of the continuum? • Or scale answers to reflect some level of difference? • Is the term ‘usually’ culturally comparable?

35. Discussion: Number of Domains • Workgroup in agreement that Walking, Seeing and Cognitively 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. (see Workgroup 3)

36. Conclusion • Beware the bearer of simple answers.