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Congenitally deafblind children and cochlear implant – effect on communication


Dr. Jesper Dammeyer, Department of Psychology, University of Copenhagen, was available from 11/2/09 until 11/22/09
to answer questions and share ideas concerning his research and its implications for parents of children who are deaf/hard of hearing, their teachers and other professionals who work with them.

You are encouraged to read the research summary below and review the attached discussion.

There has been much research conducted demonstrating the positive benefits of cochlear implantation (CI) in children who are deaf. Research on cochlear implantation in children who are both deaf and blind, however, is lacking.

Ratings of video observations were used to measure 5 children’s early communication development with and without the use of their cochlear implants. In addition, parental interviews were used to assess the benefits parents perceived regarding their children’s cochlear implants. Benefits of cochlear implantation in this cohort of children included improved attention and emotional response as well as greater use of objects in interaction with adults. The best overall outcome of CI is not spoken language but better communication.

In the years since the advent of paediatric implantation, a positive effect of cochlear implantation for people with acquired deafblindness has been reported, both in auditory performance (Pennings et al., 2006; Saeed, Ramsden, & Axon, 1998), as well as in quality of life (Damen, Pennings, Snik, & Mylanus, 2006). Conversely, congenitally deafblind children, among other children with additional disabilities, had not been considered as cochlear implant candidates. One explanation was the huge medical and psychological problems congenitally deafblind children were forced to contend with: either the cochlear implantation was too risky a surgical procedure, or hearing loss was not the most important problem facing the child.

In Scandinavia there is a strong tradition of focusing upon social interactions and communication in the habilitation of congenitally deafblind children (Rødbroe & Souriau, 1999; Janssen & Rødbroe, 2007). To create and expand social interaction is fundamental for the development of communication and possible later signed or oral language. The emergence of communication takes place via the processes of social interaction during play activities and in natural settings. The partner responds to and expands upon the child’s expressions of emotions and desires by regulation of contact, joint attention, turn-taking, and rhythm and tempo using tactile stimulation etc. (Janssen & Rødbroe, 2007; Nafstad & Rødbroe, 1996).

Along this line experiences have been positive regarding the 20 congenitally deafblind children with CI in Scandinavia (January 2007): less isolation, less self-stimulation, more awareness of the surroundings, motivation to investigate the surroundings, understanding of emotional expressions, and, in a few cases, understanding of single words and sentences. The aim of this study is to test these positive experiences.

Five congenitally deafblind children from different parts of Scandinavia participated. The children were between 5.0 and 8.0 years old at the time of testing (M = 6.3). Range of age at implant surgery was 2.2 to 4.2 years (M = 3.6). At the time of testing, all children had used the CI for at least 1.0 year (M = 2.8 years).
The children were observed by video in free play with a known adult (parent or caretaker) in known and natural contexts (home or institution). The five children were videotaped for about 30 minutes with their cochlear implants switched on and for another 30 minutes with them switched off. From both of the 30-minute observations with and without CI, two episodes of two minutes’ duration each were selected. The episodes of two minutes each were rated using six variables for every turn. All variables were selected to represent relevant aspects of the early stages of communication development of deafblind children as described in the introduction.

Modality of Communication: Three categories were used: Linguistic signs: When the child or the adult communicates or tries to communicate by single signs or sign-language sentences. Linguistic speech: When the child or the adult communicates or tries to communicate by single words or spoken sentences. Non-linguistic communication: Communicational behaviour such as pulling, pointing, screaming, kissing, and twisting the body.

Dialogue: Three categories were used: Initiative: If the child or the adult tries to establish a new round of communication. Answer: If the child or the adult responds along the same lines. No answer: If the child or the adult does not understand their partner.

Quality of Communication: The quality of the communication was rated on a scale ranging from 1 to 5. A 1 rating was given if “the communicational act makes the communicational interaction much worse,” while a 5 was rated if “the communicational act makes the communicational interaction much better.”

Manipulation of Objects, attention and emotional response were also rated on a scale ranging from 1 to 5. A rating of 5 was given if the manipulation of objects, attention or emotional response was relevant, i.e. in line with and adequate to, the social interaction. A score of 1 was indicative that the manipulation of objects, attention or emotional response not at all was of relevance to the social interaction.

The parents were interviewed about central issues concerning the outcome of the cochlear implantation and its impact on everyday life. The questions went beyond the variables rated in the video observations. For example: Is it easier or more difficult to understand why the child is sad, happy or angry? Does the child find it easier or more difficult to move around and explore new environments?

For all children together, the difference between episodes with CI and without CI was significant for the variables Speech-turn, Quality of Communication, Manipulation of Objects, Attention, and Emotional Response. Even for some of the children individually the difference between episodes with CI and without was significant for these variables. There was no significant difference for the parameters concerning the Dialogue (Initiative, Answer and No-answer for the child or the adult).

In the interviews, all parents report that they would recommend CI to other parents with congenitally deafblind children. None of the parents had any negative experiences related to CI. Before implantation, all parents had only limited expectations for the outcome of CI.

Despite the small number of children (five) in this study, it was possible to find a significant effect of CI for congenitally deafblind children. Though the outcome of CI was not spoken language, the progress was remarkably related to communication and social interaction. Improved attention, emotional response and manipulation of objects are all important issues in the development of communication for congenitally deafblind children (Janssen & Rødbroe, 2007) The relative difference for a deafblind child in being able to hear just a little seems to have a huge effect for the ability of the child to engage in social interaction and develop communication. When the adult responds to the child’s expressions (for example, emotions, manipulation of objects) in natural situations, it encourages the child to act in a socially significant environment. These shared social activities lead the child toward shared social meanings and communication, and further along the way toward the use of language.

Lisa: “Now it is possible to call out to Lisa. It makes me and her much more safe and relaxed”
Lisa is 5 years old. She is deafblind, but is able to use her limited vision. After CI, Lisa started slowly to make sense of sounds. She drew attention to sounds in combination with play. She started to imitate sounds she found interesting, and she also imitated the pitch of voices and rhythms. However, her reaction to sound can be difficult to identify. Lisa has been more relaxed – that is the most important effect of CI. She uses the sounds around her to make certain that she is not alone and that other children and adults are where they ought to be. Now she also uses her vision much more. She does not need to use her limited vision to control her mom’s face; now she can hear the emotional expressions in the pitch of the voice. She can concentrate on signs and movements, and communicates with signs and gestures much better than before. Three years after the operation, she has started to react to sounds without any cues. She turns around when she hears a sound and when she hears her name.

This study finds an overall good effect of cochlear implant use among congenitally deafblind children. The outcome is not spoken language, but better social interaction and communication. CI can be very helpful for the communicative and social development of congenitally deafblind children. CI is a relevant aid in the habilitation of congenitally deafblind children as a support to sign-language, tactile sign-language, and other modes and kinds of communication

Damen, G. W. J. A., Pennings, R. J. E., Snik, A. F. M., & Mylanus, E. A. M. (2006). Quality of life and cochlear implantation in Usher syndrome type I. Laryngoscope, 116(5), 723-728.

Janssen, M., & Rødbroe, I. (2007). Communication and Congenital Deafblindness II: Contact and Social interaction. DK: Materialecentret.

Nafstad, A., & Rødbroe, I. (1996). Congenitally Deafblindness, interaction and development towards a model of intervention. In M. Laurent (Ed.), Communication and congenital deafblindness. The development of communication. What is new? Paris: Centre National de Suresnes.

Pennings, R. J. E., Damen, G. W. J. A., Snik, A. F. M., Hoefsloot, L., Cremers, C. W. R. J., & Mylanus, E. A. M. (2006). Audiological performance and benefit of cochlear implantation in Usher syndrome type I. Laryngoscope, 116(5), 717-722.

Rødbroe, I., & Souriau, J. (1999). Communication. In J. M. McInnes (Ed.), A Guide to Planning and Support Individuals who are Deafblind. Toronto: University of Toronto Press.

Saeed, S. R., Ramsden, R. T., & Axon, P. R. (1998). Cochlear implantation in the deafblind. American Journal of Otology, 19(6), 774-777.

JDSDE Reference

Dammyer, J. (2008). Congenitally deafblind children and cochlear implant – effect on communication The Journal of Deaf Studies and Deaf Education 14(2), 278-288.