Listening through deaf ears : parental experiences of the wired world
Sensorineural hearing loss affects 1 to 3 of every 1000 children born. In most cases the child is non-syndromic (meaning that it is not associated with any congenital features) and the child is well. Sensorineural loss in childhood limits the development of spoken language but with amplification (hearing aids) or cochlear implantation and intensive habilitation these children may develop spoken language. This Master's thesis details a qualitative research study which aimed to examine the experiences of parents throughout New Zealand prior to, and in the years following their child's cochlear implant. The Research Question What are the experiences of parents whose child(ren) undergo cochlear implantation in New Zealand? Method The decision to use qualitative research methods was deemed to be the most appropriate given that the aims of the study were based on exploring the experiences of the parents. A constructivist methodology was used to explore the meaning of these parents' experiences. The study was carried out throughout New Zealand in 2007, and fourteen parents (seven parent pairs) participated in the study. Data for the study were sought through open-ended in-depth interviews. The analysis was iterative, therefore subsequent interviews incorporated issues raised by previous participants. The data from the interviews were analysed using a general inductive approach. Results Several prominent themes were found. Parents reported experiences of profound shock after their child's initial diagnosis, a sense of isolation, and ongoing emotional distress which they did not perceive as being appreciated by the many health and service providers involved in the ongoing management of their child(ren). Many parents found the referral process erratic and the hearing aid trial a source of stress and frustration, with little benefit. Despite the stress of the surgery and the considerable habilitation work involved in the post-implantation period, the parents were overwhelmingly positive about the benefits noted after surgery. All parents described their implanted child as a "normal" child. There was low use of sign language and there was limited contact with the Deaf community. Many parents spoke of the need for sign language but reported a range of difficulties accessing tuition. These issues were more apparent for families in remote communities. Conclusions The implications arising from this study suggest that the management of implanted children by health and education providers needs to emanate from a definitive family oriented paradigm. The needs of siblings and other extended family members also need consideration. Cochlear implantation provides a management tool, not a cure, for childhood deafness and implanted children will continue to face significant challenges in the world of hearing persons. The low use of sign language suggests that these children may not be receiving a holistic and pluralistic approach to their language development. As a consequence of limited contact with the Deaf community, minimal use of sign language, low modelling of its value by parents and increasing demands placed on implanted children to function as "hearing", these children may face additional challenges as they mature.
Advisor: Dovey, Susan
Degree Name: Master of General Practice
Degree Discipline: General Practice (Medicine)
Publisher: University of Otago
Research Type: Thesis