Children With Cochlear Implants
Changing Parent and Deaf Community Perspectives
John B. Christiansen, PhD; Irene W. Leigh, PhD
Arch Otolaryngol Head Neck Surg. 2004;130:673-677.
ABSTRACT
Comments
Archives of Otolaryngology—Head & Neck Surgery
Changing Parent and Deaf Community Perspectives
John B. Christiansen, PhD; Irene W. Leigh, PhD
Arch Otolaryngol Head Neck Surg. 2004;130:673-677.
ABSTRACT
Objective To examine changing parent and deaf community perspectives related to pediatric cochlear implantation.
Design This research is based primarily on 2 nonrandom study designs. In the first study, conducted by the Gallaudet University Research Institute, Washington, DC, in the spring of 1999, a 12-page questionnaire was distributed to 1841 parents of children with cochlear implants; 439 questionnaires were returned. In the second study, we conducted 56 interviews with parents of 62 children with implants (and 1 without).
Subjects Parents of children with cochlear implants; Gallaudet University faculty, staff, students, and alumni.
Results While parents frequently receive conflicting information about educational and communication options for their child, they generally support signing before and after implantation. The parents of a child with an implant have a great interest in their child's spoken language development, and most would like to have had their child receive an implant earlier. Children with implants are educated in a variety of educational settings. Mainstreamed children with implants often continue to require classroom support services, and children with implants are frequently not isolated from both deaf and hearing peers. Parents have mixed experiences when getting information from persons in the deaf community.
Comment Opposition to pediatric cochlear implantation within the deaf community is giving way to the perception that it is one of a continuum of possibilities for parents to consider. To ensure optimal use of the cochlear implant, parents need to remain involved in their child's social and educational development.
Comments
Until recently, there was strong opposition in the deaf community to pediatric implants in contrast to the grudging neutrality expressed with regard to adult implantation. A 1991 position statement of the National Association of the Deaf (NAD)8 stated, "[The NAD] deplores the decision of the Food and Drug Administration [to approve implantation in children aged 2-17] which was unsound scientifically, procedurally, and ethically." Also, "The parents who make the decision for the child are often poorly informed about the deaf community, its rich heritage and promising futures. . . ."
The new NAD position paper on cochlear implants,9 issued in October 2000, reads, in part, "Cochlear implantation is a technology that represents a tool to be used in some forms of communication, and not a cure for deafness." Also, "The NAD recognizes all technological advancements with the potential to foster, enhance, and improve the quality of life for all deaf and hard of hearing persons." And finally, "The NAD recognizes the rights of parents to make informed choices for their . . . children, respects their choice to use cochlear implants and all other assistive devices, and strongly supports the development of the whole child and of language and literacy."
In an important way, the views expressed in the new NAD position paper on cochlear implants could make it easier for parents to decide to get a cochlear implant for their child. Why? Because changing views in the deaf community, as reflected in the NAD position paper, suggest that implantation will not irrevocably cut off a child with an implant from the cultural deaf community. Parents will feel less torn and rejected as they assess their decision, since they see themselves as providing additional options for their children in both hearing and deaf worlds.
While parents are not always comfortable about taking advice from deaf persons, it is nonetheless important to keep in mind that adult deaf persons know what life as a deaf person is like. They have their own unique perceptions of the value of cochlear implantation, perceptions that vary considerably among those who are part of the deaf community, depending on the nature of their backgrounds and experiences. As a consequence, dilemmas faced by parents may be a little less difficult to resolve, because it is increasingly clear that many decisions related to implantation do not have the unavoidable "either-or" quality that many had previously assumed. For example, as noted earlier, having a cochlear implant will not inevitably separate a young child from the deaf community or from deaf friends; it does not automatically mean that a child will never sign and will have only hearing friends, nor does it mean that in classroom settings a child will no longer require support services.
Another example of the changing climate was the establishment of a Cochlear Implant Center at Gallaudet University in 2000 (the Laurent Clerc National Deaf Education Center). One of the purposes of this center is to educate children with implants in an educational setting that emphasizes both visual and auditory learning.
In light of these developments, we distributed a questionnaire to a mostly random sample of faculty, staff, students, and alumni in the spring and summer of 2000 to assess the changing climate at Gallaudet. One of the 9 statements on the questionnaire asked whether "Gallaudet University should do more to encourage students with cochlear implants to attend." Most of the deaf (54%), hearing (71%), and hard-of-hearing (65%) respondents agreed with the statement. Another statement in the questionnaire asked whether "[f]aculty and staff should be encouraged to sign with voice whenever possible in order to make the University more ‘user friendly' for students who use voice communication more than sign, as many cochlear implant users do." In comparison to hearing (31%) and hard-of-hearing (24%) respondents who disagreed, a much higher proportion of deaf respondents disagreed (63%). Thus, while there may still be resistance in some areas to making accommodations for students with implants, the trend seems to be moving in the direction of inclusiveness rather than exclusiveness. Some respondents also added comments such as, "More parents are choosing to have their deaf kids implanted. That is their right to choose. Gallaudet needs to prepare to meet the needs of a more diverse student body if it wants to continue to exist." And, "I formerly did not support the cochlear implant as I felt it would destroy the deaf community. But now I respect individual choice and feel the cochlear implant is part of deaf culture, anyway. People's perspectives on deaf culture are different now."
Parents of deaf children are confronted with the need to make choices about issues that they may have seldom thought about before learning of their child's hearing loss. Objective advice and information may be difficult to come by, not only because parents are new to the field and may find it difficult to evaluate the quality of the information but also because the information itself may be presented in way that implies that there is only one "obvious" or "correct" way to proceed. Even though the samples in both the GRI parent survey and in our interviews were clearly biased in favor of implants (owing to the difficulty in recruiting parents with negative experiences), the parents we interviewed often told us that they would like professionals to be more open about providing information on different options. Based on our research findings, these parents do avail themselves of a variety of communication and educational options. While support services in the mainstream (the most frequent educational placement reported by parents) may be less expensive than traditional residential schools, educating a child with a cochlear implant is by no means cost free. Consequently, educational costs of children with implants (including indirect costs to the family when one parent decides to quit his or her job to work with the child) continue to be an important issue.10-12
It is certainly true that implantation will probably make it easier for deaf children, especially those who receive implants before the age of 5 years,13-14 to acquire spoken language, depending on their ability to maximize implant use through intensive training. But it is also true that many deaf persons who do not use spoken language are leading very successful and productive lives. Clearly, many persons in the deaf community, including faculty, staff, students, and alumni at Gallaudet University, are much more open minded about cochlear implants today than they were 5 or 10 years ago, although some still question pediatric implants. Has the "cochlear implant community" changed, too, in reflecting more diversity in opinions? Does the cochlear implant community reach out to deaf community members who come seeking information?
What is most important, perhaps, is that we recognize that there are many different avenues to success. It is also important to acknowledge that early identification of hearing loss is crucial, that early communication between the deaf child and his or her parents and family is vital, whatever the communication choice, and that a lot of hard work on everyone's part is necessary to continue to foster the "common ground" that is emerging in the debate about the appropriateness of pediatric cochlear implants. Ongoing, important questions that everyone needs to be concerned about regarding the educational needs of children with cochlear implants are, "To what extent are schools and school systems with implanted children successfully meeting their needs?" "And, if some of the challenges are not being satisfactorily addressed, what policy and/or personnel decisions need to be made in order to enhance the educational experiences of these children?"
Archives of Otolaryngology—Head & Neck Surgery
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