A World of Difference. Parental Perspectives on Cochlear Implantation in Deaf Children with Additional Disabilities

Abstract

An increasing number of deaf children with additional disabilities receive a cochlear implant (CI). International studies on cochlear implantation in deaf children with additional disabilities show less and slower speech and language gains, but improvement in overall quality of life. In order to qualify the concept of quality of life this study examined the perspectives and experiences of the Dutch parents of twenty-three of these children. A qualitative approach with in-depth interviews was chosen to capture the perspectives of parents and to provide a description of daily life before and after implantation, the processes of referral, assessment, and deliberation, and the parental satisfaction with the services and support they received from the CI centres. Thematic analysis was used to identify themes inductively from the data without trying to fit them into an existing model or theory. Twenty-three children started the CI trajectory, twenty received a CI, three of them at a second CI centre after rejection by the first. Half of the parents were satisfied with the CI centre they visited. The other half reported mild criticism or dissatisfaction, most often because of a lack of case management. Our findings suggest that according to the parents most deaf children with additional disabilities benefit from cochlear implantation: the vast majority in terms of quality of life, a significant minority in terms of speech perception and production.