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

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.