1. Presentation on Communication Question 6 6 th Meeting of the Washington Group Kampala,Uganda 10 – 13 th October 2006

2. Definition of responses WG6: Disability: Because of a physical, mental or health condition, do you have difficulty communicating, for example understanding or being understood by others? –‘Some’, ‘a lot’ or ‘unable to do’ = yes –‘no’ = no 1.Do you feel shy in group or social situations? Yes/no 2.Do you have difficulty in making new friends? Yes/no 3.Do you have difficulty in starting and maintaining a conversation? (0 – 3) 4.Do you have difficulty in generally understanding what people say? (0 – 3) 5.Combination: 2 X ‘yes’ on 2, 3 and 4

3. Patterns: non-problematic A: No difficulty on WG6 and no other reported difficulties (true negative) B: no difficulties except for ‘shy’ : Not a communication difficulty? H: yes on everything: True positive; not sure of ‘yes’ on ‘shy’ and ‘friends’ – part of, secondary or unrelated to communication difficulty

4. Patterns: borderline C: Similar to B with additional ‘yes’ on ‘friends’. Not a communication difficulty. (unproblematic) D: ‘no’ on WG6 but ‘yes’ on ‘conversation’ E: ‘no’ on WG6 but ‘yes’ on ‘understanding what others say’ –D and E: ? Role of hearing loss where cannot hear to ‘understand’ and ‘conversation’ but where do not feel they have communication difficulty. F: ‘No’ on WG6 but yes on others (Combination of 2) – ? Same as for D & E but slightly more effect I: As for F but with ‘yes’ for WG6: worse than F as has enough effect to be noted on WG6 as a problem.

5. Patterns borderline (Contd) J: ‘yes’ for WG6 and ‘say’ – ?significant effect of poor understanding K: as for J with ‘yes’ for conversation. L: ‘yes’ for WG6 and for ‘friend’ and ‘shy’ but ‘no’ for understand and conversation – see being shy and not making friends as being communication problem.

6. Problematic G: ‘no’ for WG6 but ‘yes’ on all others. Intermittent problem (e.g. from epilepsy seizure) or different frame of reference for WG6 and detailed Qs M: ‘yes’ on WG6 and ‘no’ on all others except for ‘shy’ – effects of a mental illness rather than a communication and focus on introductory comment N: ‘yes’ on WG6 and no on all others – focus on introductory phrase.

12. Comments on frequencies of patterns NOTE: Frequencies are number of times a pattern arises and NOT a ‘disability rate’ Unproblematic patterns (A, B and H) make up the majority of patterns Borderline patterns (C, D, E, F, I, J, K, L) are less frequent than unproblematic but more than problematic Problematic are least frequent

13. Analysis of ‘why’ comments Reviewed 600 responses (until finding no new themes in responses) Coded themes: Showing understanding of the question (WG6) with or without difficulties Problematic responses: ambiguous, focus on the introductory phrase, second language problems, non-health reasons, etc. Other Frequency of occurrence of each in first 600 cases of the cognitive dataset

15. Showing understanding of WG6 No difficulty and mention understanding and expressing –Communication is not a problem –I speak and the respond perfectly –I don’t have a problem understanding people or being understood –I can communicate with people freely and I can write and have a mobile –Because we sit and converse and laugh together No difficulty but no mention of understanding and expressing –I don’t have such problems –I am healthy –The way I feel –I feel confident –I am cheeky (!)

16. Show understanding (contd) No difficulty and mention hearing –Can talk and hear as no problem –I have good communication. I don’t have problem hearing and speaking Has difficulty and mentions hearing – mostly Deaf –Sign language users gave responses of 1 or 2 –Indicated no problems when talking to sign language users –Also included hard of hearing

17. Show understanding (contd) Has difficulty and mentions physical problem related to communication –stroke –Epilepsy –Cleft lip and palate –Stammering –Heavy tongue Weakness and illness –I can’t communicate when my mental illness increases –I get very weak following my dialysis. My mood is often off and I don’t talk too much

18. Borderline Has difficulty but no specific attribution – does not seem to have a clear frame of reference for the Q –Because people talk too quickly –When people talk to me I understand very little of what they say –This is the major problem –There is limitation in the communication because of the complex –Am not intelligent –Just because –Because of the accident

19. Problematic understanding Focus on introductory phrase (With/without difficulty) –I don’t have any mental or physical problem –I have no mental problem –Mentally fit Shyness and lack of socialisation (have difficulty) –Complex because of albinism, self pity and not confident –Rarely communicate –Shy with new communication –Being shy with partners, particularly girlfriend

20. Problematic (Contd) Cognition (have difficulty) –Sometimes I can’t remember and understand others –I forget things Unrelated physical problem –Because of weak legs and arms, feel embarrassed –Because cannot see, cannot present very well Second language problem

21. Problematic (contd) Ambiguous – some have difficulty and others not –Don’t go out because of hand surgery (1) –Am handicapped (3) –I am now sensitised (0) –Thanks God (0) –Job application (1) –Because I have no stories to tell them (0) –I feel nothing (0) –When I get nervous I shout and then get mute because of the shock (2) –It is true (0) –Because you asked (1)

22. Other Development issue –Because he is still young Missing ‘Don’t know’ or ‘no answer’

23. Conclusions Generally question is understood Hearing is only part of the understanding of communication Introductory phrase can be misleading Reference to Sign language could change response category from ‘yes’ to ‘no’. Some confusion with cognitive problems and shyness Few confusions with second language Reference to problems such as blindness and weakness in legs and arms