What information is provided to families of newly identified deaf/hard of hearing children?

When a child is identified as deaf/hard of hearing, parents are faced with the decision of cochlear implantation (CI). There is currently no policy regarding what information must be provided during the informed consent process.

The purpose of this project is to investigate the informed consent process for pediatric cochlear implantation with a focus on the frequently omitted psychosocial, linguistic, and cultural aspects of development with a CI.

More specifically, the project is designed to

• Identify what information is provided to parents during the informed consent process.
• Determine the percentage of audiologists providing alternatives to CIs.
• Determine the percentage of audiologists that present all available communication modalities.
• Determine the percentage of audiologists that discuss the long-term risks of cochlear implantation.

It was hypothesized that: All communication modalities are not discussed by 50 percent or more of audiologists. All long-term risks associated with cochlear implantation (e.g., psychosocial implications) are not discussed by 50 percent or more of audiologists. Alternatives to CI are not discussed by 50 percent, or more, of audiologists.

Pediatric audiologists were recruited via a mailing list of 500 individuals, obtained from the American Academy of Audiology (AAA). Further recruitment was through private social media groups dedicated to audiologists. Seventeen responses were obtained.The survey was conducted online through Research Electronic Data Capture (REDCap).

Future implications of this study may indicate the need to develop a structured policy to ensure parents have equal access to the information before proceeding with CI. The research may also reveal a need for restructuring audiology curriculum to include a more in-depth education on CI alternatives.