1. Meeting the needs of deaf children with cochlear implants Sue Archbold The Ear Foundation Shaping the future for deaf children in London, Camden, 7 May 09 1

2. Times have changed….. u First paediatric cochlear implant in UK 1989 – The Ear Foundation in Nottingham…… u And now? u What do we know? u What have we learned? 2

3. And now? u The majority of profoundly deaf children have implants – over 4,000 in UK u Increasingly in first year of life u Increasingly in teens…. u Increasingly complex children u Increasingly bilaterally implanted - or hearing aid and implant… u Increasingly deaf children of deaf parents…… 3

4. s th f dt oo aw ahay ee m n ng Hearing Thresholds

5. 5 Very early implantation u Evidence of safety and effectiveness: u Lesinski et al (2006) : safe and effective in first year of life u Svirsky (2006) – implanted at one doing better than at two u Dettman et al (2008) implanted under one development of spoken language in normal development. u National Libraries for Health – via www.earfoundation.org.uk

6. 6 Short term measure:TAIT analysis: Early communication skills? u TAIT video analysis – we know that communication skills before implantation predict later progress and at one year after implantation predict progress at three years after implantation (Tait et al, E&H, 2000) u So…… u Tait et al (2007) u Comparing those implanted at 1, 2 and 3

7. 7 Margaret looked at Non Looking Vocal Turns) u 33 children implanted at 1+ (1.0 – 1.11) u 33 children implanted at 2+ (2.0 – 2.11) u 33 at 3+ (3.0 – 3.11) u Children implanted at Nottingham Cochlear Implant Programme

8. 8 Non Looking Vocal Turn Results one year after implant u 3+: NLVT mean: 15.4%; median 5% u 2+: NLVT mean: 19.5%; median 20% u 1+: NLVT mean: 66.3%; median 71% u Children implanted at 1+ scored significantly higher after 12 months than children implanted at 2+ or 3+ u Statistical significance: p< 0.0001 between 1+ and 2+ or 3+; NS between 2+ and 3+

9. 9 Communication changes in early implanted children u 12 months after implantation u 3+: Sign 82%, Oral 18% u 2+: Sign 70%, Oral 30% u 1+: Sign 15%, Oral 85%: p< 0.0001 u 1+ 6 months after implantation: Oral 61%

10. 10 Changing communication: 3 phase project u Phase 1 – 176 children who had received an implant at least five years previously at Nottingham Cochlear Implant Programme: looking at communication mode over time u Phase 2 – Questionnaires sent to families of 284 children who had received a cochlear implant at least 5 years previously, asking why changes had taken place…. u Phase 3 – 12 families selected for interview to look at the issues further

11. 11 Phase one u 176 children from Nottingham Cochlear Implant Programme u All those implanted for at least five years…. u Documented whether using oral or signed communication, before and annually after implantation u Does communication mode change over time……

12. 12 Communication changes after implantation: effect of age at implant on changing use of sign Watson et al, 2006 The Ear Foundation

13. 13 Those implanted young changing: Percentages using oral communication or sign communication implanted under three

14. 14 Phase 2 - Aims u Phase 1 showed that children change their communication mode after cochlear implantation BUT u We did not know what factors contribute to this u Phase 2 examines what parents/carers thought contributed to change of communication between sign and speech: by questionnaire

15. 15 Parents of 142 children replied… u We asked about communication mode before implant and currently (at least five years after) on a five point scale: entirely sign, mainly sign, about equal, mainly speech, entirely speech. u 120 indicated a change in communication choice u 113 towards spoken language u 7 towards signed communication

16. 16 They were then asked to comment on 10 statements about possible reasons for a change of communication u The three statements with which parents most strongly agreed: u Want most effective means of communication u Want the most useful means of communication u Change was led by the child’s preference for spoken language

17. 17 Sample comments… u “It was a very natural and child driven change to spoken language. He prefers spoken language both receptively and productively.’ u ‘Our communication mode has always been motivated by request.’ u ‘We have not dictated the communication methods but have followed lead … he tells us to speak not sign.’ u ‘ says he doesn’t need sign language any more.’ u ‘The change was made because we followed our child's lead once spoken language began to develop.’

18. 18 One statement on which they were neutral u Parents neither agreed not disagreed with the statement that they were following the advice of the teacher of the deaf u Take no notice of professionals’ advice? u Parents make their decisions independently of advice from professionals (fits with aim of professionals to provide parents with unbiased advice so they can make an informed choice) Watson et al, JDSDE, 2007

19. 19 Phase 3: Interviews with 12 families u They discussed a “communication journey” u Different strategies may be used at different times u Children’s needs changed over time u Main goal was spoken language but a value of sign input too…. u Wheeler et al, CII, 2008

20. 20 Most effective communication (oral or sign, gesture) AFTER IMPLANTATION Development of Spoken Language supported by Audition Reduction f of Sign/SSE BEFORE IMPLANTATION Spoken Language established – increased interest in use of sign: SSE or BSL CI “ The Communication Journey” Before implant

21. 21 Mum talking…about choices

22. 22 It worked for me!

23. 23 Moving on from the old arguments u Many parents and young people see a role for some sign too…. u Although spoken language is the major goal… and attainable for the majority

24. 24 Challenge the old views u Is there a role for Sign Supported English? u The world of deaf young people has changed and will continue to change…… u They want new options…

25. 25 Moving on from the old arguments? u Cochlear implantation with the level of the hearing it provides may help us do so

26. 26 We still have a problem… u We know that earlier implantation is more successful although we don’t know yet how early… u So we need to advise early implantation - but u We also know that there are important things for parents to do with a young baby… The Ear Foundation

27. 27 What about educational attainments? u Cochlear implantation is set in a medical/scientific context - the major goal is hearing u Teachers of deaf children may have differing agendas……..differing priorities…differing goals… what about educational attainments? The Ear Foundation

28. 28 Family and educational outcomes u Educational issues; u Stacey et al 2006 : 2853 children – 468 with implants : improvements in educational attainments, compared with those with hearing aids u Thoutenhoofd, 2006 : Scottish data to show children with implants outperformed those with hearing aids, particularly in maths u Damen et al, 2006,2007: children with implants did less well than hearing children in mainstream schools – similar results to Mukari et al The Ear Foundation

29. 29 Reading…. u Reading is key to educational attainment u Traditionally a major challenge for deaf children u Reading levels predict later educational attainments The Ear Foundation

30. 30 Reading outcomes.. u Geers (2003) found over half scored within the average range for hearing children (181) u Geers,Tobey and Moog (2005) when retesting group later found that some were struggling with reading at secondary level – higher order language skills required u (Vermeulen 2007) Reading comprehension of children with implants significantly better than those without, but still delayed compared with hearing peers (50) The Ear Foundation

31. 31 Reading outcomes.. Nottingham Cochlear Implant Programme Reading age :(Edinburgh Reading Test): 105 children, implanted under 7 Measure: The difference between their reading age and their chronological age: net reading age A child of 9 with reading age of 9 scores 0 A child of 9 with reading age of 10 scores +1 A child of 9 with reading age of 8 scores -1 Archbold et al, 2008 The Ear Foundation

32. 32 5 years after implant: Gap (in years) v Age at implant – Edinburgh Reading Test The Ear Foundation

33. What do we know? children and young people with implants are: u Using them u Increasingly going to mainstream schools u Increasingly using spoken language u Reading at improved levels u Pragmatic about their use and use of sign.. u Comfortable with their identity…it’s a new world… 33

34. 34 How can we facilitate the journey? u What do young people say? u Interviewed 29 young people across UK – 13- 17years – used Nvivo software u Funded by NDCS

35. 35 Results  All except two wore all of the time  Benefit:  Rating 1-5 all gave a score of 3 or above  Occasional non-use:  Swimming! Bathing/shower etc  Sports  Very noisy situations/Headache

36. 36 Cochlear Implant  Decision-Making  Mostly parental on behalf of child  Some mid –late implanted young people making the decision for themselves u None criticised their parents: u “ I respect them for making that decision” u “I was too young to understand but I’m OK with that.”

37. 37 Advantages? u All mentioned positive things: u “Yes cochlear implants work because you can hear more, talking to friends, understand everything, go out and have a good time.” u “Without the implant I would not manage.” u “I don’t like it if it’s not working because I don’t know what’s happening”

38. 38 Disadvantages u Some disadvantages: u “In noisy situations it is hard to hear people talking” u Four mentioned headaches u Three complained the post aural processor fell off during sports u Two mentioned not liking going to hospital

39. 39 Family and Social Relationships  Family  Positive about communication  Friends  Mostly a mix of hearing or deaf  Flexible communication skills, speech and/or sign depending on need.  Social gatherings  Groups for meeting other implanted Teenagers

40. 40 Identity  Deaf or hearing?  15/29 ‘Deaf’  7/29 ‘Hearing and Deaf’  6/29 ‘Hearing’  “I’m deaf but I hear with my implant.”  Had a flexible view of themselves- it’s a changing world  Pragmatic about communication – mainly used speech but valued sign too.

41. 41 Identity 2 “I’m a normal teenage boy” “I’m a bit of both –when I’m at the airport and there’s all these announcements I think I’m deaf and weird! I do! When I’m at the deaf club I think I’m deaf but here with my family I’m in the middle” (female, spoken language, congenital/genetic) “To be honest inside me I’d say I’m hearing because I can hear what everyone else is saying” (male, spoken language, congenital)

42. 42 Educational Issues  Cochlear Implant  Implant helps understanding in classroom (76%)  Sign support is as important as CI (7%)  Need visual clues – but may be different to those previously provided for profoundly deaf  Use of note-takers rather than signed support  Pre-class preparation  Address the acoustics in the classroom  Teaching styles

43. 43 Conclusions  Booklet AND paper…  Wheeler et al, 2007, JDSDE  www.earfoundation.org.uk  Follow up projects: Now looking at their needs in secondary school

44. European wide study asking what is needed...– the strongest message from parents and professionals……. u Training for local professionals was by far the most common issue to be raised by parents and professionals – u Especially in mainstream, for teachers and classroom assistants, - the need for long-term management, the management of technology – u early support was not continuing, new teachers need training, support into adulthood – better local services and links with cochlear implant centres. u Supported by Cochlear Europe

45. Parents’ talking…. u “Need to realize that ci is not a quick “fix” and the children still need support in whatever educational provision they are in whether signing or oral, mainstream or special” u “Most day to day support is from parents and teachers – they need to be well informed” u “Our son had implant at brilliant centre, and was sent to school with little knowledge… we have been fighting for an education which will help him to develop his CI use best” (Archbold & Wheeler, submitted)

46. Review of parents’ needs after cochlear implantation…(with NDCS) u “It is dreadful in my experience. It is incomprehensible that my daughter could receive £60K worth of technology and no clear plan about how to enable her to make best use of it. Complete waste of resources with lots of people 'involved' in her care but doing very little of any use other than endless assessment. Thank goodness for the voluntary sector. CI centre care great at technical support” 46

47. Review of Parents…. (NDCS) u “The message needs to be sent out loud and clear that CI is not a miracle cure for deafness. Our son is doing extremely well with his CI but because of this, he is regarded as not needing support, which is wrong. “ 47

48. 48 A parents’ view…. “My biggest problem was the over-expectation of family and friends and the under- expectations of the professionals.”