From isolation and dependence to autonomy – expectations before and experiences after cochlear implantation in adult cochlear implant users and their significant others

Abstract

Purpose: The aim of the study was to examine pre-operative expectations and the post-operative experiences related to cochlear implants (CI) in CI-users and their significant others. Methods: A questionnaire was used and the responses were analysed by means of The Qualitative Content Analysis. All adults implanted between 1992 and 2010, who had had their implants for a minimum of 12 months (n = 120) were contacted. Response rate was high (90.8%), and all-inclusive answers were received from 101 CI-users (84.2%). Results: The overall sense of increased well-being and life satisfaction was described as having lived in two different worlds, one with the auditory stimulation and one without. In the overall sense of increased well-being and satisfaction three interwoven subcategories, alienation – normality, fear – autonomy, and living a social life emerged. When CI-users and their significant others recalled the time prior to receiving the CI, a sense of fear was present with origins in the concern for the respondents' (CI-users) ability to cope and care independently in society. Conversely, after the implantation both parties emphasized the notion of a distinct transformation within the CI-user towards autonomy. Communication was highlighted as a large part of living social life. Conclusion: The CI increases well-being and satisfaction for both CI-users and their significant others, which is especially evident regarding enhanced autonomy, normality and living social life.

Implications for Rehabilitation

• Before implantation it is important to discuss the fact that phone calls and listening to music are improvement expectations that might not be met by the CI.

• The perceived life changes affect the lives of both the CI-users and the significant others, a finding important to take into consideration before implantation and during rehabilitation after the implantation.

• Before implantation it is important to inform both CI-recipients and significant others about the length of time required to be able to hear selectively after the implantation and about past experiences of CI-users.

• Autonomy
• cochlear implant
• experience
• hearing loss
• well-being

Declaration of interest

The study was supported by the Swedish Association of Hard of Hearing People and Swedish Council for Working Life and Social Research (Dnr 2010-0761).