Influencing Outcomes for Children Who Are Deaf-Blind With
Cochlear Implants
-Research Studies-Findings
-Implications
The Teaching Research Institute/Western Oregon University
Funded by the U.S. Department of Education, Office of Special Education-Technology and Media Services for Individuals with Disabilities (CFDA 84.327A). Grant H327A080045; Project Officer, Maryann McDermott. Opinions express within are those of the project/authors and do not necessarily represent the position of the U.S. Department of Education.
PresentersKat Stremel Thomas & Mark Schalock
Project Staff
TRI – Kat Stremel Thomas; Mark Schalock; Bernie Samples; Peggy Malloy; Cindi Mafit
East Carolina University – Susan Bashinski, PhD
Cincinnati Children’s Hospital Medical Center – Susan Wiley, MD & Charlotte Ruder
Acknowledgements
• We wish to extend a special thank you to all of the children and their parents who are participating in the study.
• We also wish to thank the many State Deaf-Blind projects and private consultants who assisted with the research
• We couldn’t have accomplished this task without you!
States That Are Represented (26 + DC)
• Arizona• California• Delaware• Florida• Georgia• Illinois• Indiana• Kansas• Kentucky• Maryland• Massachusetts/Perkins School for the Blind• Mississippi• Missouri• Nebraska
• New Jersey• New York• North Carolina• Ohio (CCHMC)• Oklahoma• Oregon• Pennsylvania• South Carolina• Tennessee• Texas• Virginia• Washington• Washington, DC
Three Major Project Phases
• Research - Today’s focus
• Research to Practice - Intervention Strategies
• Practice to Technical Assistance & Training – Methods used to teach caregivers
Outcomes: Participants will increase their knowledge of:
1. …the demographics for children with deaf-blindness who receive cochlear implants (implant to age eight years),
2. …the research studies currently in progress and the research designs,
3. …the preliminary findings of the studies and findings of special populations,
4. …challenges for families, and
5. …the implications of the findings for families and service providers.
2009 National Child Count for Children Who Are Deaf-Blind
• 4,313 children have a mod-severe, severe or profound sensorineural hearing loss
• States increased their identification of children with implants from 251 in 2005, to 581 in 2009
• An increased number of children are receiving bilateral implants
Outcomes of Project
• To collect data on the outcomes and related factors for children (dbci) so that parents can make more informed decisions about implantation, services, types of therapy for their children
• To identify factors underlying more positive outcomes with the long-term objective of improved intervention and access to opportunities for language growth
Research Studies
• Study A – What effect does age at implant and hearing age have on child outcomes?
• Study B – What are the differences in the caregiver’s verbal interactions before and after implant?
• Study C – What are the effects of individualized interventions carried out by the caregivers post implant in natural environments? (In Progress)
Research: Children Who Are Deaf-Blind With Cochlear
Implants
• Participants Status: How many children are participating?
• Demographics: Who are these children?
Participant Demographics
Status
Number of Assessments
Total1 2 3 4 5 6
Post CI Only20 28 14 5 -- -- 67
Pre CI Only14 2 -- -- -- -- 16
Pre-Post CI-- 10 6 2 -- 1 19
Total34 40 20 7 -- 1 102
•Participants with bilateral implants = 19
Participant Demographics
Vision Impairment Participants
Low Vision (<20/200) 28%
Legally Blind 27%
Light perception only 6%
Totally Blind 7%
CVI 16%
Diagnosed progressive loss 3%
Variations of field loss 13%
Participant DemographicsEtiology Percentage
CHARGE 26.5%
Complications of Prematurity 20.6%
CMV (Cytomeglovirus) 9.8%
Meningitis 2.9%
Refsum syndrome (MSP I-S) 1.9%
Usher I syndrome 1.9%
Usher II syndrome 1.9%
Leber congenital amaurosis 1.0%
Klippel-Feil sequence 1.0%
Congenital Rubella 1.0%
Asphyxia 1.0%
Encephalitis 1.0%
Microcephaly 1.0%
Other 17.7%
Unknown 11.8%
Participant Demographics
Additional Challenges
• 58.7% have physical challenges
• 55.9% have cognitive challenges
• 20.6% have behavior challenges
• 63.7% have complex health care needs
Participant DemographicsParticipants’ Age at Implant
Range = 6 months to 6 years 0 months
12 months or younger = 14
13 - 24 months = 33
25 – 36 months = 23
37 – 48 months = 5
over 48 months = 8
(Participants ranged up to 8 years of age at time they joined study)
Participant DemographicsParticipants’ Duration with Implant as of most
recent Assessment: Time in Sound/Hearing Age
Range = 2 month to 5 years 0 months12 months or less = 2013 - 24 months = 1525 – 36 months = 1237 – 48 months = 11over 48 months = 26
* A large number of our young participants have little “time in sound.”
Research Studies
• Study A: What effect does age at implant and hearing age have on child outcomes?
• N = 86
• Longitudinal design
• Outcomes: Taken from a battery of assessments
Assessments
• A battery of assessments were selected that examined child behaviors across a variety of domains, across the age range from birth to 60 months & included small increments across items.
• The Rynell-Zinkin Scales have been validated for children with low vision and blindness.
• The assessments are repeated across time (depending on post implant or pre-implant status; at least annually for post).
Assessments Used In the Research/Intervention Project
• Communication & Symbolic Behavior Scales Developmental Profile
• MacArthur-Bates Communicative Developmental Inventories (W&G;W&S)
• Reynell-Zinkin Scales• (7 sub-scales)
• Infant-Toddler Meaningful Auditory Integration Scale or
Meaningful Auditory Integration Scale
• Speech Intelligibility Measures
STUDY A: Example Data Analyses
REYNELL-ZINKIN
• Response to Sound
• Vocalization and Expressive Language
• Age at Implant
• “Time in Sound”
• Age at Assessment
Example Data AnalysesMost Recent Post CI Reynell-Zinkin Response to Sound
by Age at Implant (r = .042)
0
6
12
18
24
30
36
6 10 11 12 12 12 12 13 14 16 16 17 18 18 20 20 21 22 22 22 23 23 23 24 25 26 27 27 28 28 30 30 32 35 36 40 45 51 54 58 62 72
Age at Implant
Example Data AnalysesMost Recent Post CI Reynell-Zinkin Response to Sound
by Hearing Age/Time in Sound (r = .290 )
0
6
12
18
24
30
36
1 3 4 6 7 8 9 11 12 13 14 15 16 19 20 22 27 30 31 32 35 35 37 39 42 42 45 46 49 53 54 55 56 57 60 60 63 67 69 76 82 83
Hearing Age/Time in Sound
Example Data AnalysesMost Recent Post CI Reynell-Zinkin Response to Sound
by Age at Assessment (r = .279)
0
6
12
18
24
30
36
19 20 25 31 34 37 40 41 45 51 53 54 59 62 64 68 70 72 76 79 81 83 84 87 91 93 96 106
Age at Assessment
Example Data AnalysesReynell-Zinkin Response to Sound: Implanted at
20 Months or Younger
0
7
32
8
2
6
3
8
5
1
7
21
4
7
11
98
14
19
6
11
19
3 3
87
89
21
5
8
26 26
1
12
18
5
3
8
10
8
35
7 7
0
6
12
18
24
30
36
6 7 10 12 12 12 12 14 16 16 17 18 20 20
Age at Implant
1st Assessment 2nd Assessment 3rd Assessment 4th Assessment
Example Data AnalysesReynell-Zinkin Response to Sound: Implanted after 20 Months
6
3
0 0
2
4
0
6
23
18
4
2
9
78
0
9
2
5
3
16
29
3
26
3
0
3
98
7
14
5
9
0
22
31
10
18
7
1
13
11
2
10
25
0
6
12
18
24
30
36
21 22 23 25 26 27 28 28 28 30 33 35 46 58
Age at Implant
1st Assessment 2nd Assessment 3rd Assessment 4th Assessment
Example Data AnalysesReynell-Zinkin: Response to Sound
(Implanted before 24 months)
8
2 2 03
0
6
0
8
149
41
59
38
26
5 7
0
6
12
18
24
30
36
12 12 12 13 14 16 21 22
Pre CI Post CI 1 Post CI 2
Reynell-Zinkin: Response to Sound (Implanted after 24 months)
0 2 25 3
0
24
49
0 0
95
118 10
1
24
11 13
25
5
1410
0
6
12
18
24
30
36
25 26 26 28 30 30 51 53 58 62 72
Pre CI Post CI 1 Post CI 2
Reynell-Zinkin Response to Sound• Little relationship between age at implant and
receptive language
• Significant, but weak relationships between hearing age and age at assessment and receptive language
• Children’s receptive language DOES improve significantly over time post implant
• Children’s receptive language DOES improve significantly from pre to post implant
Example Data AnalysesMost Recent Post CI Reynell-Zinkin Vocalization & Expressive
Language by Age at Implant (r = .082)
0
4
8
12
16
20
24
6 10 11 12 12 12 12 13 14 16 16 17 18 18 20 20 21 22 22 22 23 23 23 24 25 26 27 27 28 28 30 30 32 35 36 40 45 51 54 58 62 72
Age at Implant
Example Data AnalysesMost Recent Post CI Reynell-Zinkin Vocalization & Expressive
Language by Hearing Age/Time in Sound (r = .294)
0
4
8
12
16
20
24
1 3 4 6 7 8 9 11 12 13 14 15 16 19 20 22 27 30 31 32 35 35 37 39 42 42 45 46 49 53 54 55 56 57 60 60 63 67 69 76 82 83
Hearing Age/Time in Sound
Example Data AnalysesMost Recent Post CI Reynell-Zinkin Vocalization & Expressive
Language by Age at Assessment (r = .250)
0
4
8
12
16
20
24
19 20 25 31 34 37 40 41 45 51 53 54 59 62 64 68 70 72 76 79 81 83 84 87 91 93 96 106
Age at Assessment
Example Data AnalysesReynell-Zinkin Vocalization and Expressive Language: Implanted at
20 Months or Younger
0 0 0 0 0 0 0 0 0
5
0 0 0 0
5
13
11
2
9
15
13
43
4 43
566
12
15
4
9
1617
3 3
13
43
6
8
18
45
9
0
6
12
18
24
6 7 10 12 12 12 12 14 16 16 17 18 20 20
Age at Implant
1st Assessment 2nd Assessment 3rd Assessment 4th Assessment
Example Data AnalysesReynell-Zinkin Vocalization and Expressive Language: Implanted
after to 20 Months
0 0 0 0 0 01
0 0 0
3
0 0 0
10
6 6 6
9
6
3
14
12
3
1
54
1211
8
5
11 11
7
4
16
21
5
19
4 4
16
10
6
15
5
0
6
12
18
24
21 22 23 25 26 27 28 28 28 30 33 35 46 58
Age at Implant
1st Assessment 2nd Assessment 3rd Assessment 4th Assessment
Example Data AnalysesReynell-Zinkin: Vocalization and Expressive Language
(Implanted before 24 months)
0 0 0 0 0 0 0 0
13
9
2 13
5
11
4
17
9
4 4
0
4
8
12
16
20
24
12 12 12 13 14 16 21 22
Pre CI Post CI 1 Post CI 2
Reynell-Zinkin: Vocalization and Expressive Language (Implanted after 24 months)
0 0 0 0 0 0 0 0 0 1 1
64
10
6
25
13
3
16 1513
11
15
0
4
8
12
16
20
24
25 26 26 28 30 30 51 53 58 62 72
Pre CI Post CI 1 Post CI 2
Reynell-Zinkin Vocalization and Expressive Language
• Little relationship between age at implant and expressive language
• Significant, but weak relationships between hearing age and age at assessment and expressive language
• Children’s expressive language DOES improve significantly over time post implant
• Children’s expressive language DOES improve significantly from pre to post implant
Data for Post Implant ChildrenN=83
RECEPTIVE LANGUAGE EXPRESSIVE LANGUAGE
Response to sound 100% Sound production 100%
Response to words and phrases
63.9% One-word production/jargon
48.1%
Word identification(out of context)
45.8% Meaningful words 40.9%
Simple directives 26.5% Simple sentences 22.8%
Complex directives 21.7% Complex sentences 12.0%
Data for Pre-Post Implant ChildrenN=19
RECEPTIVE LANGUAGE EXPRESSIVE LANGUAGE
Response to sound
Pre Post
63% 100% Sound production
Pre Post
11% 100%
Response to words and phrases
16% 68% One-word production/jargon
0% 47%
Word identification(out of context)
5% 42% Meaningful words 0% 47%
Simple directives 5% 16% Simple sentences 0% 16%
Complex directives 5% 16% Complex sentences 0% 0%
Post-CI Data for Children with CHARGE (N=20)
RECEPTIVE LANGUAGE EXPRESSIVE LANGUAGE
Response to sound 100% Sound production 100%
Response to words and phrases
60% One-word production/jargon
55%
Word identification(out of context)
50% Meaningful words 50%
Simple directives 40% Simple sentences 35%
Complex directives 35% Complex sentences 20%
Overall Findings to Date: Study A
• The children in the study are a very diverse group.
• With this diversity comes complex relationships rather than simple relationships between such things as age and outcomes
• These children (as a group) do experience improvements in receptive and expressive language pre to post implant.
• Individual outcomes vary considerably.
Overall Findings to Date: Study A
• The children (as a group) do experience improvements in receptive and expressive language over time after receiving an implant.
• Individual outcomes vary considerably.
Study B - Research Question: Do caregivers talk to the child more after implantation
compared to pre-implant?
• Use of the Language Environmental Analysis to record:
- the audio enviornment
- the adult’s verbalizations
- the child’s vocalizations
- the turns in conversation
LENA Data• Auditory Environment
• Meaningful Talk• Distant Talk• TV• Noise• Silence
• Adult Words• Child Vocalizations• Conversational Turns• Estimated Mean Length of Utterance• Estimated Developmental Age (in months)• Standard Score• Percentile
LENA Data
LENA Data
LENA DataMean Counts Per Hour: Child A
1751
1498
158209
49 66
0
200
400
600
800
1000
1200
1400
1600
1800
2000
Post CI Post Bi-Lateral CI
Assessment
Co
un
t
Adult Word Count Child Vocalizations Conversational Turns
LENA DataStudy B: Child A
1834
1990
1409
1858
1670
15281469
1633 1678
1320
1727
14591372
1281
200312
89 131210
156 188261
142 98 103185
257162
81 47 33 34 52 76 56
0
500
1000
1500
2000
2500
PostCI1 PostCI2 Post CI3 PostCI4 PostCI5 PostBi-Lat1 PostBiLat2
Status
Co
un
ts
Adult Words Female Male Child Vocalizations Conversational Turns
LENA DataMean Counts Per Hour: Child B
924890
25
105
724
0
100
200
300
400
500
600
700
800
900
1000
Pre CI Post CI 1
Assessment
Co
un
tAdult Word Count Child Vocalizations Conversational Turns
LENA DataStudy B: Child B
862914
997959
857 855
558599
648
786743 755
304 315349
173114 100
17 31 26
123 106 86
6 8 7 28 24 19
0
200
400
600
800
1000
1200
Pre1 Pre2 Pre3 Post1 Post2 Post3
Status
Cou
nts
Adult Words Female Male Child Vocalizations Conversational Turns
Overall Findings to Date: Study B
• Small numbers of pre-post implant children and their parents to date.
• Significant variability seen in parental interactions with their children.
• Some initial increase in verbal interactions by both parents after implantation observed.
• Parental verbal interactions varies considerably over time.
Study C – What are the effects of individualized interventions carried
out by the caregivers post implant in natural environments? (In Progress)
LENA Data
Mean Counts Per Hour: Child C
1264
692
1136 1097
1770
144 119 166109 6441 25 41 31 21
0
200
400
600
800
1000
1200
1400
1600
1800
2000
Pre CI 1 Pre CI 2 Post CI 1 Post CI 2 Post Intervention 1*
Data Collection Period* CI Wire Broken during data collection period
Adult Word Count Child Vocalizations Conversational Turns
LENA Data
Study C: Child C
1360
812 805853
1476
1308
1474
966
1418
1835
839
605665
455
959
1115
1304
824880 898
521
206140
398
517
193 169 142
538
936
148 109165
243149 153
100 13342 7244 30 27 43 42 46 35 33 11 25
0
200
400
600
800
1000
1200
1400
1600
1800
2000
Pre1 Pre2 Pre3 PostCI1 PostCI2 PostCI3 PostCI4 PostCI5 PostInt1 PostInt2
Status
Cou
nts
Adult Words Female Male Child Vocalizations Conversational Turns
Overall Findings to Date: Study C
• Multiple child behaviors and caregiver strategies are targeted in 12-16 sessions.
• Repeated sessions across time are necessary for parent implementation. Important implications for TA
• Three children & their caregivers have completed the intervention; others are in progress.
• Observed parent and child outcomes in maintenance and generalization conditions are encouraging.
LEVEL Behaviors Assessment 1
Assessment 2
Assessment 3
Assessment 4
Assessment 5
Condition Post 1/Pre 2(4/2009)
Post 1/1 mo. Post 2 (11/2009)
Post 1/ 2 removed (8/2010)CI Intervention
Prelinguistic prelocutionary
Makes wants known by any communication
18 18 54
Responds to simple gestures(tactile)
0 0 71
Illocutionary 1
Uses deictic gestures 3 3 20
Illocutionary 2
Uses representational gestures (Iconic signs)
0 0 0
Expressive Communication
Imitates vowel sounds/words
0 0 0
Demonstrates ability to use a few words (3-5)
0 0 0
Uses at least 50 words 0 0 0Joins 2-3 words together 0 0 0
Receptive Communication
Responds to words 0 1 19
Responds to Simple Phrases
0 3 22
Demonstrates Object ID 0 0 16
Functions of Communication
Protest/rejection 100 100 100
Request object/action 0 0 50
Greet/ 0 0 25
Shows objects/comments
0 0 0
Attention 25
Games & Routines
0 0 33
Object Use 0 0 18
Pretend Play 0 0 0
Imitating Adult 0 0 0
Levels of Communication Matrix…taken from our battery of assessments
Limitations To Progress
• Many of the children did not have prelinguistic communication skills
• Many of the children did not have functional object use skills
• A-V programs were not individualized
• Many of the children did not wear their implants consistently
• Many of the children were not mapped frequently (and possibly accurately)
• Many children were “dropped” from A-V programs due to lack of progress
• Parents were not taught effective strategies that could be used at home
• Programs and parents often use toys/objects that have high vibration and visual properties and not sound
• Many children do not hear frequent speech that is directed to them in close proximity
Variability in Outcomes….
• Indicates the need for individualized and adaptive approaches (Moeller, 2006)
• Indicates the need to integrate perception/receptive and production/expressive outcomes
• Need to incorporate more cognitive skills into intervention (Pisoni, et al., 2010)
• Indicates a need to do a better job of teaching parents how to implement strategies and embed them in caregiving, play, family activities.
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