ArticleHealth expectations : an international journal of public participation in health care and health policy2024
The (in)visibility of deafness: Identity, stigma, quality of life and the potential role of totally implantable cochlear implants.
Article in Health expectations : an international journal of public participation in health care and health policy, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 6 papers.
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The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
6 citing papers in PubMed, 11 citations in OpenAlex.
- Living with Cochlear Implants (LivCI): development and validation of a new patient-reported outcome measure (PROM) of personal factors associated with living with cochlear implants.Health and quality of life outcomes · 2026Observational
- Deaf nursing professionals: experiences of social interaction and communication in professional practice.Revista latino-americana de enfermagem · 2026Article
- The Ongoing Challenges of Hearing Loss: Stigma, Socio-Cultural Differences, and Accessibility Barriers.Audiology research · 2025Review
- The (in)visibility of deafness: Identity, stigma, quality of life and the potential role of totally implantable cochlear implants.Health expectations : an international journal of public participation in health care and health policy · 2024Article
- Experience of conductive hearing loss and impacts of hearing aid use throughout life.Frontiers in rehabilitation sciences · 2024Article
- Evaluation of a Totally Implantable Cochlear Implant in Adults With Bilateral Sensorineural Hearing Loss: A Feasibility Study.Ear and hearingArticle
Corrections and comments
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Authors and funding
5 authors at 2 institutions in 1 country.
Funding
Abstract
introductionThe disclosure of deafness is complex, given the historic and on-going stigma associated with being deaf. The aim of this study was to explore how identity, stigma, and quality of life may be impacted when using cochlear implants (CIs) and totally implantable cochlear implants (TICIs). The physical difference between these two assistive listening devices is significant, given many CI users opt to hide their sound processor behind hair or headwear, in contrast to TICIs (an emerging technology) whereby all components are implanted internally and thus invisible.
methodsThis qualitative study involved semistructured interviews and demographic questionnaires with 12 adult participants with more than 1 year of experience using their CI. Participants were recruited Australia-wide through community organisations that support deaf and hard-of-hearing individuals. Interview transcripts were analysed thematically, with the themes generated through an inductive process, with consensus generated through group working with three members from the research team.
resultsFour major themes were identified: (1) CI challenges; (2) The importance of social and support networks; (3) Identity and disclosure and (4) Concerns about TICIs. The underlying finding was centred around the construction of deaf identity. Participant attitudes were generally categorised as 'Loud and proud', with the recognition that displaying the CI was an extension of self, something to be proud of, and a means to normalise deafness; or 'Out of sight and out of mind', which sought to minimise the visibility of deafness. While both identities differed in how deafness is disclosed, they are fundamentally related to the same ideas of self-agency and empowerment.
conclusionTICIs present a novel opportunity-the ability for CI users to control the visibility of their deafness and thus control disclosure. This study explored the impact of stigma and categorised two core identities that CI users construct. Future directions include investigating potential CI candidates, to explore if TICIs may be a facilitator to CI uptake. PATIENT OR PUBLIC CONTRIBUTION: The semistructured interview guide was developed in consultation with adults with CIs. Feedback led to adjustments and improvement to the interview guide. In addition, F. R. has a lived experience with hearing loss, and C. Y. L. is an executive committee member for a nonprofit charity organisation that supports families that are D/deaf and hard-of-hearing.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.