Wiley Susan, Jahnke Margaret, Meinzen-Derr Jareen, Choo Daniel
Division of Developmental Disabilities, Cincinnati Children's Hospital Medical Center, 3333 Burnet Avenue, MLC 4002, Cincinnati, OH 45229-3039, USA.
Int J Pediatr Otorhinolaryngol. 2005 Jun;69(6):791-8. doi: 10.1016/j.ijporl.2005.01.011. Epub 2005 Mar 2.
To determine families' perceived benefits of cochlear implants in children with multiple-handicaps.
Parents/guardians of a child with a cochlear implant for at least 3 months, under the age of 18 years and had least one additional disability were recruited for participation through rehabilitation therapists. Families who did not have a child enrolled in therapy at the study center were contacted by mail. Families were asked a number of open-ended and close-ended questions. Interviews were audiotaped and transcribed, with answers to open-ended questions coded by themes.
We interviewed 19 families of 20 children and included 15 families of 16 children who had had at least 6 months of cochlear implant experience for this study. The mean time between implantation and study was 3 years (S.D.+/-2.2) with a range of 0.5-8 years. Children were highly compliant in wearing their device. Sixty-eight percent (11/16) of the children were enrolled in additional therapies beyond speech and aural rehabilitation therapies. Fifty percent of families (8/16) indicated they had no obstacles to accessing therapies. Insurance was the most common barrier to accessing therapies (18% of respondents). All children made communication progress post-implant as described by their families. All families felt that the cochlear implant team provided enough information prior to receiving the implant to help families make the appropriate decision about implanting their child. All families said that if they were to make the decision again, they would choose to have their child implanted.
More children with multiple-handicaps are receiving cochlear implants. Very young children may undergo cochlear implantation only to be subsequently diagnosed with an additional impairment or disability at later ages. As a result, it is important to understand the specific needs of this population and the parental perceptions of benefit in order to provide the best services and opportunities for success with a cochlear implant. Although not all of the children gained gold standard speech and language outcomes, all children broadened their communication skills. In motivated families of children with additional disabilities, it is appropriate to provide them with the same opportunity to access audition and expand their communication abilities as any other child with a hearing impairment.
确定家庭对多重残疾儿童植入人工耳蜗所感知到的益处。
通过康复治疗师招募了植入人工耳蜗至少3个月、年龄在18岁以下且至少还有一项其他残疾的儿童的父母/监护人参与研究。未在研究中心为孩子登记治疗的家庭通过邮件联系。向家庭询问了一些开放式和封闭式问题。访谈进行了录音和转录，开放式问题的答案按主题进行编码。
我们采访了20名儿童的19个家庭，本研究纳入了16名儿童的15个家庭，这些儿童至少有6个月的人工耳蜗植入经验。植入与研究之间的平均时间为3年（标准差±2.2），范围为0.5 - 8年。孩子们对佩戴设备的依从性很高。68%（11/16）的儿童除了接受言语和听觉康复治疗外，还参加了其他治疗。50%的家庭（8/16）表示他们在获得治疗方面没有障碍。保险是获得治疗最常见的障碍（18%的受访者）。如家长所述，所有儿童在植入后沟通能力都有进步。所有家庭都认为人工耳蜗团队在植入前提供了足够的信息，以帮助家庭就孩子植入做出合适的决定。所有家庭都说，如果再次做决定，他们会选择让孩子植入人工耳蜗。
越来越多的多重残疾儿童接受人工耳蜗植入。非常小的儿童可能仅接受人工耳蜗植入，随后在较晚年龄被诊断出还有其他损伤或残疾。因此，了解这一人群的特殊需求以及家长对益处的认知，以便为人工耳蜗植入提供最佳服务和成功机会非常重要。虽然并非所有儿童都达到了金标准的言语和语言结果，但所有儿童都拓展了他们的沟通技能。在有额外残疾儿童的积极配合的家庭中，为他们提供与其他听力障碍儿童相同的获得听觉和拓展沟通能力的机会是合适的。
