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不要将其视为奇迹疗法:在小儿耳蜗植入的家庭叙述中,对成功和失败的有争议的概念。

Don't look at it as a miracle cure: Contested notions of success and failure in family narratives of pediatric cochlear implantation.

机构信息

Human Development & Family Studies, Women's Gender and Sexuality Studies, University of Connecticut, USA.

出版信息

Soc Sci Med. 2019 May;228:117-125. doi: 10.1016/j.socscimed.2019.03.021. Epub 2019 Mar 16.

DOI:10.1016/j.socscimed.2019.03.021
PMID:30909155
Abstract

Cochlear implants (CIs) are a routine treatment for children identified with a qualifying hearing loss. The CI, however, must be accompanied by a long-term and intense auditory training regimen in order to possibly acquire spoken language with the device. This research investigates families' experiences when they opted for the CI and undertook the task of auditory training, but the child failed to achieve what might be clinically considered "success" - the ability to function solely using spoken language. Using a science and technology studies informed approach that places the CI within a complex sociotechnical system, this research shows the uncertain trajectory of the CI, as well as the contingency of the very notions of success and failure. To do so, data from in-depth interviews with a diverse sample of parents (n = 11) were collected. Results show the shifting definitions of failure and success within families, as well as suggest areas for further exploration regarding clinical practice and pediatric CIs. First, professionals' messaging often conveyed to parents a belief in the infallibility of the CI, this potentially caused "soft failure" to go undetected and unmitigated. Second, speech assessments used in clinical measurements of outcomes did not capture a holistic understanding of a child's identity and social integration, leaving out an important component for consideration of what a 'good outcome' is. Third, minority parents experience structural racism and clinical attitudes that may render "failure" more likely to be identified and expected in these children, an individualizing process that allows structural failures to go uncritiqued.

摘要

人工耳蜗植入术(CIs)是为确诊有听力损失的儿童提供的常规治疗方法。然而,为了有可能使用该设备获得口语,CIs 必须辅以长期而强烈的听觉训练方案。本研究调查了家庭在选择 CI 并承担听觉训练任务时的经验,但孩子未能达到临床上可能被认为是“成功”的标准——仅使用口语进行功能的能力。本研究采用了一种以科技研究为基础的方法,将 CI 置于复杂的社会技术系统中,展示了 CI 的不确定轨迹,以及成功和失败的概念的偶然性。为此,收集了来自不同背景的父母(n=11)的深入访谈数据。研究结果表明,家庭内部对失败和成功的定义不断变化,并为临床实践和儿科 CI 提出了进一步探讨的领域。首先,专业人士的信息传达往往向家长灌输对 CI 可靠性的信念,这可能导致“软性失败”未被发现和缓解。其次,临床评估中用于测量结果的语音评估并未全面理解儿童的身份和社会融合,忽略了对“好结果”的重要考虑因素。第三,少数族裔家长经历结构性种族主义和临床态度,这可能使这些孩子更容易被识别和预期“失败”,这种个体化过程使结构性失败不受批评。

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Don't look at it as a miracle cure: Contested notions of success and failure in family narratives of pediatric cochlear implantation.不要将其视为奇迹疗法:在小儿耳蜗植入的家庭叙述中,对成功和失败的有争议的概念。
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