How Japanese parents of deaf children arrive at decisions regarding pediatric cochlear implantation surgery: a qualitative study

In recent years, many children with severe or profound congenital hearing loss have undergone treatment to receive cochlear implants; however, the efficacy and risks associated with pediatric cochlear implants are still unknown. Some deaf adults are opposed to parents making the decision regarding cochlear implants for their children. To elucidate the benefits and risks perceived by parents and to investigate parents' decision-making processes, we interviewed 26 parents of deaf children (aged 12 years or younger) who live in the wider Tokyo area, Japan. The results showed that the participants perceived auditory and speech improvements as benefits. On the other hand, participants pointed out various risks associated with cochlear implantation such as medical complications, restrictions on daily activities, cost of cochlear implant upgrades, low effectiveness, and the negative psychosocial impact associated with the implants. Participants who emphasized the benefits of the surgery tended to approve of cochlear implants. Participants who emphasized the risks of the surgery tended to disapprove. All participants, however, were reluctant to make the decision to undergo cochlear implants on behalf of their children due to the uncertain benefits and risks. Participants who believed that early implantation during infancy would be associated with better outcomes regarded their surrogate decision-making as necessary and approved the treatment. This decision, however, was made with certain stipulations; for example, these parents resolved to discuss the decision with their children as they got older, and would give their children the option of having the implant removed. Those who did not believe claims about the effectiveness of early implantation postponed decision-making. These results suggest that guardians face difficulty in decision-making and need information and support from various professionals, deaf adults, parents of children with implants, and children with implants themselves.