Deaf parents and pediatric cochlear implantation: an exploration of the decision-making process

Abstract

Objective To examine factors which play a role in deaf parents' decision-making process for cochlear implantation (CI) or traditional hearing aids. Participants Parents, at least one deaf, of children with severe/profound congenital hearing loss, born 1999-2004. Methods Thematic content analysis within a phenomenological approach was applied to interviews with parents. Results With the exception of a family with one hearing parent, none of the parents gave priority to spoken language development. Spoken language was considered as nothing more but equal to their “mother tongue”, sign language. As the parents were familiar with deafness and the Deaf community, professional advice was not an important element in their decision-making. Instead, they primarily focused on such aspects as “Deaf identity”, “participation in the Deaf community”, “the role of sign language” and “ethical issues” such as surrogate decision-making. Issues of secondary importance were “medical risks and consequences related to CI”, “expectations regarding education and employment”, and “information and knowledge about hearing loss and assistive technology”. Finally, expectations for new hearing assistive technologies and cost-related aspects did not play any role. Conclusions The decision-making of deaf parents has some fundamental characteristics which differentiate it from that found among hearing parents. Most deaf parents do not think of their child's deafness as a personal tragedy for which a quick, medical treatment is necessary. Instead, deafness is part of the family's culture and identity, and questions regarding the child's hearing loss focus on a wider concept of social participation, in which the Deaf World plays an important role. The fact that our analysis also shows some overlap with hearing parents' views, as well as differences between deaf parents, illustrates the complexity of the issue, rather than confirming the stereotype of deaf parents completely rejecting CI.