Okubo Suguru, Takahashi Miyako, Kai Ichiro
The University of Tokyo, Social Gerontology, Bunkyo-ku, Tokyo-to, Japan.
Soc Sci Med. 2008 Jun;66(12):2436-47. doi: 10.1016/j.socscimed.2008.02.013. Epub 2008 Mar 24.
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.
近年来，许多重度或极重度先天性听力损失儿童接受了人工耳蜗植入治疗；然而，小儿人工耳蜗植入的疗效和风险仍不明确。一些成年聋人反对父母为其子女做出人工耳蜗植入的决定。为了阐明父母所感知到的益处和风险，并调查父母的决策过程，我们采访了居住在日本东京地区的26位失聪儿童（12岁及以下）的父母。结果显示，参与者将听觉和言语改善视为益处。另一方面，参与者指出了人工耳蜗植入相关的各种风险，如医疗并发症、日常活动受限、人工耳蜗升级成本、效果不佳以及与植入物相关的负面心理社会影响。强调手术益处的参与者倾向于赞成人工耳蜗植入。强调手术风险的参与者倾向于反对。然而，由于益处和风险不确定，所有参与者都不愿代表子女做出接受人工耳蜗植入的决定。那些认为婴儿期早期植入会带来更好结果的参与者认为他们的替代决策是必要的，并赞成这种治疗。然而，这一决定有一定的条件；例如，这些父母决定在孩子长大后与他们讨论这个决定，并会给孩子选择移除植入物的权利。那些不相信早期植入有效性说法的人则推迟了决策。这些结果表明，监护人在决策方面面临困难，需要来自各专业人士、成年聋人、植入人工耳蜗儿童的父母以及植入人工耳蜗儿童自身的信息和支持。
