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在南非,家长所感受到的与小儿人工耳蜗植入过程及所获得的支持服务相关的挑战。

Parent-perceived challenges related to the pediatric cochlear implantation process and support services received in South Africa.

作者信息

Bhamjee Aaqilah, Roux Talita le, Schlemmer Kurt, Perold Jenny, Cass Nicolize, Schroeder Kelly, Schlesinger Dani, Ceronio Deon, Vinck Bart

机构信息

Department of Speech-Language Pathology and Audiology, University of Pretoria, Pretoria, South Africa.

Department of Speech-Language Pathology and Audiology, University of Pretoria, Pretoria, South Africa.

出版信息

Int J Pediatr Otorhinolaryngol. 2019 Nov;126:109635. doi: 10.1016/j.ijporl.2019.109635. Epub 2019 Aug 10.

Abstract

OBJECTIVE

To determine and describe parent-perceived challenges related to the pediatric cochlear implantation process and support services received.

METHOD

A multicenter survey study across six cochlear implant (CI) programs in South Africa (SA) was conducted. The study sample included 82 parents of pediatric (≤18 years) CI recipients with at least 12 months CI experience. A self-administered questionnaire was developed for the purpose of this study, exploring parental challenges regarding the CI process, education of their implanted children and the support services received.

RESULTS

The financial implications of cochlear implantation, including CI device maintenance, were identified by parents as the most prominent challenge. Financing issues were the highest scoring reason that attributed to the delay between diagnosis of hearing loss and cochlear implantation, as well as the greatest barrier to bilateral implantation. Parent-perceived educational challenges included finding adequate educational settings specific to the individual needs of their child and a shortage of trained teachers equipped to support children with CIs. The presence of one/more additional developmental conditions and grade repetition were associated with more pronounced parent-perceived educational challenges. Parents considered speech-language therapy as the most critical support service for their implanted children to achieve optimal outcomes, while parent guidance was indicated to be the most critical support service required for parents of pediatric CI recipients.

CONCLUSION

A greater understanding of parent-perceived challenges will guide CI professionals to promote optimal outcomes, evidence-based service delivery and on-going support to pediatric CI recipients and their families. Study results imply a call for action regarding financial and educational support for pediatric CI recipients in SA.

摘要

目的

确定并描述家长所感受到的与小儿人工耳蜗植入过程及所获得的支持服务相关的挑战。

方法

在南非的六个人工耳蜗植入项目中开展了一项多中心调查研究。研究样本包括82名小儿(≤18岁)人工耳蜗植入受者的家长,这些受者至少有12个月的人工耳蜗植入经验。为该研究专门设计了一份自填式问卷,以探究家长在人工耳蜗植入过程、对植入孩子的教育以及所获得的支持服务方面面临的挑战。

结果

家长们认为人工耳蜗植入的经济影响,包括人工耳蜗设备维护,是最突出的挑战。资金问题是导致听力损失诊断与人工耳蜗植入之间延迟的得分最高的原因,也是双侧植入的最大障碍。家长所感受到的教育挑战包括为孩子的个人需求找到合适的教育环境,以及缺乏有能力支持人工耳蜗植入儿童的训练有素的教师。存在一种或多种其他发育状况以及留级与家长所感受到的更明显的教育挑战相关。家长们认为言语语言治疗是使植入孩子取得最佳效果的最关键支持服务,而家长指导被认为是小儿人工耳蜗植入受者家长最需要的关键支持服务。

结论

更深入了解家长所感受到的挑战将指导人工耳蜗植入专业人员促进小儿人工耳蜗植入受者及其家庭取得最佳效果、提供循证服务并给予持续支持。研究结果意味着呼吁对南非的小儿人工耳蜗植入受者在经济和教育支持方面采取行动。

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