Cochlear Implants in Young Children: Informed Consent as a Process and Current Practices

Abstract

Purpose This study examined the types of information that pediatric cochlear implant (PCI) centers and teams provide to parents of deaf children and the extent to which the informed consent process extends beyond medical issues to include social and cultural aspects. A second purpose was to determine the extent to which centers are applying selected new practices in cochlear implantation: younger age at implantation and bilateral implantation. Method A 23-question survey was sent to 445 cochlear implant centers in the United States. Of the 445 centers contacted, 188 (42%) were excluded as ineligible (nonpediatric), 257 (58%) were determined eligible, and 121 (47%) of these completed the survey. Survey topics included characteristics of PCI centers and teams; the role and importance of professionals/consultants; types of medical, educational, Deaf culture, and identity information and perspectives provided to parents; and current practices regarding age of implantation and bilateral implantation. Results All of the PCI teams completing the survey presented medical/surgical risks, audiologic information, and variability of communication/educational options; fewer than half (45%) presented Deaf culture and emerging autonomy/identity issues to parents. Most PCI centers felt the optimal age to implant a child was 10–15 months. The majority of PCI centers, regardless of affiliation with a teaching hospital, responded that they rarely or never implanted bilaterally, and few discussed bilateral implants with parents. Conclusions Audiologists are the only nonsurgical professionals always represented on the cochlear implant team. In order to best prepare audiologists for this role, graduate audiology programs need to address more extensively the Deaf culture and perspective, as well as genetics of hearing loss. Increased attention to educational audiology and evidence-based research regarding best age to implant and bilateral implantation needs to be included in the discussion with parents. Audiologists play a crucial role in informing parents and coordinating care, and should therefore carefully consider their role in the informed consent process.