Contested notions of "success" and "failure" in family narratives of pediatric cochlear implantation

• In Event: 3129 - Section on Medical Sociology Refereed Roundtables (1 hour)
  In Refereed Roundtable 60min: Table 28. Narratives about Chronic Illness

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 CIs in the family context. It focuses on 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 within the family. 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 often convey to parents a belief in the infallibility of the CI, causing “soft failure” to possibly go undetected and unmitigated. Second, speech assessments used in clinical measurements of outcomes are shown to be insufficient for capturing a holistic understanding of a child’s identity and social integration. 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 such structural failures to go uncritiqued.

Author

• Laura Mauldin, University of Connecticut