Presentation on Field tests Margie Schneider Dan Mont

1. Presentation on Field testsMargie SchneiderDan Mont 6th Meeting of the Washington Group Kampala, Uganda 10 – 13th 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