Parents' perspective on the care-trajectory of their congenitally deaf child: a sociological analysis of their experiences, preferences and decisions

Abstract

The context of congenital deafness has changed under the influence of recent technological innovations in the field of medicine. The implementation of universal neonatal hearing screening programmes in many countries has allowed for early care intervention, and cochlear implants offer new possibilities for hearing and spoken language development. Members of the Deaf community have challenged the medical approach of deafness and emphasised a perspective in which deafness is not considered as an impairment, but as a characteristic of a cultural-linguistic minority. Today, little is known about parents' perspective on their child's care trajectory. Given the different conceptual approaches of deafness and the fact that over 90 percent of deaf children are born to hearing parents who are unfamiliar with the issue, it is important to acquire sociological insight in parents' care-related experieneces and decisions. This dissertation adresses this issue, based on a sociological analysis of data collected among hearing and deaf parents in Flanders, Belgium. The results demonstrate the importance of parents' conceptualisation of deafness for their care-related experiences, preferences and decisions. Moreover, an explanatory model was developed for parents' care-related decisions, which supports policy and professional practice as well as scientific progress in the general field of disability research.