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

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

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1
Human Development & Family Studies, Women's Gender and Sexuality Studies, University of Connecticut, USA. Electronic address: laura.mauldin@uconn.edu.

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.

KEYWORDS:

Cochlear implant; Deaf; Disability; Failure; Narratives

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