1. Presentation on Field tests Margie Schneider Dan Mont 6 th Meeting of the Washington Group Kampala, Uganda 10 – 13 th October 2006

2. Why the field tests? How does the short set of questions function in different countries? Are the questions cross culturally comparable? Do the questions capture what the intention of Q is to measure?

3. Specific objectives Determination of whether the single question per domain is representative of that domain Determination of whether the questions produce comparable data across countries Determination of how the Washington Group questions work as a set in comparisons with other questions used by the country

4. Analysis Endorsement rates for single question vs detailed questions for three different definitions of ‘disabled’ Endorsement rates for composite score on short set vs composite score on detailed set of Qs Comparison of WG Qs to specific country Qs used in previous Census/survey

5. Analysis - process Recoding of data into D1, D2 and D3 and ED1, ED2, ED3 Frequencies for each question and composite for detailed questions Crosstabulations for short question vs individual detailed and composite of detailed Questions Comparison of composite scores for WG short set and detailed set

6. Countries that did the field test Vietnam: –population based sample in one province; sample size of 3540 individuals; –WG short set + detailed questions from cognitive test + country specific questions on causes of difficulty Gambia: –Purposive sampling of 302 –Disabled and non-disabled respondents –WG short set + detailed set from field test (no additional domains) + own country questions

7. Countries that did the field test South Africa: –Purposive sample of ‘disabled’, ‘non-disabled’ and ‘unsure’ status – 185 adults and 38 parents of children (disabled and non- disabled) –WG short set + detailed set (incl additional domains) + Census 2001 question and ‘Are you/is your child disabled?’ Brazil, Paraguay and ? to do field test in November 2006

8. Cognitive test data analysis Used responses to the following: –WG short set questions –Questions that are included in the field test detailed set of questions Sample of 1639 cases from 13 countries Not population based sample Applied same analysis as for the field test Self care – limited because of detailed questions were not included in the Cognitive test

9. General comments on results Clear progression from low to high endorsement numbers when using different cutoff points (D1 – D3; ED1 – ED3) Short set/core single questions seem to be capturing more than the detailed individual questions in most domains Use of additional domains increases overall endorsement WG short set: more endorsement than Qs with ‘disability’ or ‘disabled’

16. South Africa testing process Stats SAs needs: Testing a disability schedule for Census 2011 Process includes: –Focus group study (2006) –Household survey (2006/07) –Further qualitative work (?) (2008) –Pilot of Census (2009) –Census (2011)

17. Focus group distribution 5 focus groups with parents of children (3 with disabled children and 2 with non-disabled children) 21 focus groups with adults: –9 groups with ‘disabled’ –6 groups with ‘non-disabled’ –6 groups with ‘unsure’ Mixed in terms of urban/rural and language groups All completed questionnaire before the group discussion –Background info including ‘are you disabled?’ and Census 2001 Qs –Proposed Qs for Census (WG short set) –Detailed Qs Whole questionnaires translated into all languages

18. Tape recorded Transcribed into original language Translated into English Themes in discussion: –Understanding of disability –Consistent responses on proposed questions across different groups –Issues not covered –Relevance of issues –Sensitive information on disability

22. Core vs detailed sets No major differences if use core domains for D1 vs ED1(except self care); more differences when comparing D3 vs ED3 Significant increase if use additional domains of learning, social interactions and emotional functioning. –ED1 without additional domains: 128/185 –ED1 with additional domains: 166/185

25. Reactions to questions Generally understood easily Recall period: caused some difficulties (‘can’t remember everyday for last month’) or ignored (just answered as ‘usual/normal’) Distance reference: needs to be clear Sensitivity of questions: sometimes hurtful but not sensitive (emotional functioning); important to ‘tell the world’ Sensitive topics: sexuality, toileting, direct questions about impairment, reading/writing for Deaf people, HIV status

26. Reactions to questions (contd) Relevance of questions: –Generally relevant especially for ‘disabled’ and ‘unsure’ groups –Reflected their own lives – ‘unsure’ group but not ‘non-disabled’ group –Identification with ‘disabled’: ‘unsure’ and ‘non-disabled’ groups did not identify –Identification is used politically to get access to services (e.g. Deaf group)

27. What is disability Descriptions provided by participants suggests that disability is: –Permanent –Visible and physical –Not ‘curable’ or ‘solvable’ –‘cannot do anything by themselves’ vs ‘can’t do’ only in impaired domain of functioning –‘Them’ and ‘us’ across all groups –Not positive connotation

28. What is disability? (contd) ‘Difficulty’ is less severe than disability and can be solved; Disability includes difficulty but difficulty does not include disability Disabled group were most aware of role of environmental factors on their functioning Health problem is a temporary feature and can be cured and not directly linked to disability Seeing, hearing, concentration, remembering, participation etc. are not health Aches and pains are health

29. Recommendations for changes to proposed questions Introductory phrase: change use of ‘health problem’ Change to introductory phrase of communication question Clear distance reference (‘across the road’) Training on phrase ‘even if wearing glasses or hearing aid’ Retain question on participation Need further research on E questions Avoid mention of ‘disability’ Add question on learning for young children (if space permits)

30. Additional areas for survey questions More on mental functioning Issues of transport Accessibility of built environment Availability of services and meeting of needs Employment issues Attitudes towards disabled people Personal assistance Needs such as home based care Stress Issues of sleep and energy (psychiatric illness) Medication Balance (Deaf)

31. Revised Qs for Survey GENERAL HEALTH AND FUNCTIONING The following questions ask about any difficulties that the person has because of a health problem or condition. a) Does the person have difficulty in doing any of the following? Seeing (even with glasses if he/she wear(s) them) Hearing (even with a hearing aid if he/she wears one) Walking a kilometre or climbing a flight of steps Remembering Concentrating With self-care, such as washing all over or dressing In communicating in his/her usual language, including sign language (i.e. understanding others or being understood by others) Joining in community activities (for example, festivities, religious or other activities) in the same way as anyone else can

32. Response options: 1 = no; 2 = some; 3 = a lot; 4 = unable to do; 5 = don’t know b) Does the person use any of the following? 1 = Yes 2 = No Eye glasses Hearing aid Walking stick or frame A wheelchair Chronic medication