Influencing Outcomes for Children Who Are Deaf-Blind With Cochlear Implants -Research Studies -Findings -Implications The Teaching Research Institute/Western

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


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%


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


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


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


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


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


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


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


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


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


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


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


Response to sound

Pre Post

63% 100% Sound production

Pre Post

11% 100%


16% 68% One-word production/jargon

0% 47%


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)


Response to sound 100% Sound production 100%


60% One-word production/jargon

55%


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


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


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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Influencing Outcomes for Children Who Are Deaf-Blind With Cochlear Implants -Research Studies -Findings -Implications The Teaching Research Institute/Western