The (in)visibility of deafness: Identity, stigma, quality of life and the potential role of totally implantable cochlear implants.

INTRODUCTION: The 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. METHODS: This 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. RESULTS: Four 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. CONCLUSION: TICIs 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.

Cochlear implant aesthetics and its impact on stigma, social interaction and quality of life: a mixed-methods study protocol.

INTRODUCTION: Awareness of the benefits of cochlear implants is low, and barriers such as fear of surgery and ongoing rehabilitation have been noted. Perceived stigma associated with hearing loss also plays a key role, with many adults not wanting to appear old or be identified as a person with a disability. In effect, a cochlear implant makes deafness visible. New technologies have led to a smaller external profile for some types of cochlear implants, but qualitative assessments of benefit have not been explored. This study will examine cochlear implant aesthetics and cosmetics, and its impact on perceived stigma, social interactions, communication and quality of life. A particular focus will be the examination of totally implantable device concepts. A secondary aim is to understand what research techniques are best suited and most appealing for cochlear implant recipients, to assist in future study design and data collection methods. METHODS AND ANALYSIS: This study utilises a mixed-methods design. Three datasets will be collected from each participant with an expected sample size of 10-15 participants to allow for data saturation of themes elicited. Each participant will complete a demographic questionnaire, a quickfire survey (a short concise questionnaire on a topic of research familiarity and preference) and a semi-structured interview. Questionnaire and quickfire survey data will be analysed using descriptive statistics. Interviews will be transcribed and analysed thematically. All participants will be adults with more than 1 year of experience using cochlear implants. ETHICS AND DISSEMINATION: This study has been granted ethical approval from Macquarie University (HREC: 520211056232432) and meets the requirements set out in the National Statement on Ethical Conduct in Human Research. Study findings will be disseminated widely through international peer-reviewed journal articles, public and academic presentations, plain language summaries for participants and an executive summary for the project funder. This work was supported by Cochlear Limited (Cochlear Ltd). The funder will have no role in conducting or reporting on the study.