Abstract

Outcomes for Children Who Are Deaf-Blind After Cochlear Implantation
Teaching Research Institute, Western Oregon University, in collaboration with the University of Kansas, the Midwest Ear Institute/St. Luke’s Hospital, and fourteen State Deaf-Blind Projects (CA, FL, IL, IN, KS, KY, MD, MN, MO, NE, NJ, NY, OR, PA, TX) will address the outcomes of cochlear implantation for children who are deaf-blind.  The most recent consensus statement on cochlear implants by the National Institutes of Health (NIH) has proposed that implantation prior to age 2 years “may limit the negative consequences of auditory deprivation and may allow more efficient acquisition of speech and language” (NIH, 1995, p.18). This statement is supported by research data for young children with profound hearing losses.  Whereas, many implant centers are implanting young children who have dual sensory impairments, often with concomitant impairments, extremely limited data are available on the outcomes for those children.  Teaching Research proposes to address a number of objectives that will provide a sound research base for evidence-based decision-making in relation to cochlear implantation for children who are deaf-blind.  These objectives are as follows:

  1. Develop a systematic data collection system to compile demographic information on children who are deaf-blind specific to pre-post implantation status.
  2. Identify a protocol of appropriate assessments to measure changes in auditory perception and language acquisition, receptive and expressive communication, social interaction skills, and functional life skills for children who are deaf-blind, pre- and post-implant.
  3. Collaborate with State Deaf-Blind projects, Early Childhood agencies, and Implant Centers to identify family volunteers for participation, and to connect these agencies in developing information sources for professionals, service providers, families, and consumers.
  4. Develop a protocol to address four research questions: (a) which children between the ages of 12 months to 12 years who are deaf-blind receive cochlear implants? (b) how does receiving a cochlear implant impact the developmental trajectories of children who are deaf-blind in the areas of auditory, communicative and/or social skill development? (c) how do age of implantation, severity of visual impairment, cognitive level, presence of additional disabilities, or length of time post-implant impact the positive and/or negative outcomes associated with cochlear implantation for children who are deaf-blind? (d) to what degree do the intensity, duration, and/or quality of post-implantation habilitation services contribute to the positive or negative progress of a child who is deaf-blind?
  5. Disseminate information about the project’s activities and outcomes.
  6. Evaluate project objectives and activities.

In some cases, young children who have multiple disabilities are being denied eligibility for a cochlear implant; in other cases, the numbers of these children being implanted are growing quickly. There are reports of parents having to make uninformed choices since data are not widely available. Based on reports from State Deaf-Blind projects, the National Technical Assistance Consortium for Children/Youth Who Are Deaf-Blind, and families/consumers there is a tremendous need to obtain efficacy and related information. The proposed project has the potential to be highly significant on a national and state level. It is always difficult to give parents realistic hope, yet not give encourage unrealistic expectations that can negatively affect them later. Effectiveness data for young children who are deaf-blind and have received cochlear implants are indeed necessary to provide information to families and service providers.

Abstract

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