Late diagnosis of congenital hearing impairment in children: the parents' experiences and opinions.

The purpose of the present investigation is to describe how parents experience a delayed identification of their child's hearing impairment. Ten parents of 8 children were interviewed. The impairment was confirmed when the children were between 2 years, and 5 years and 8 months. The results show that the parents and their child pass through a series of distinct phases: Unawareness, Suspicion, Confirmation and Habilitation. After the birth of the child there was first a calm period, which lasted until the possibility of a hearing impairment was suspected. Once the suspicion was raised, a time of much anxiety and frustration ensued. The parents described how defective communication and misunderstanding lead to frequent conflicts with their child. The differing behaviour of the child, in combination with poor language development, initiated referral to audiological assessment and confirmation of the hearing impairment. After confirmation, the parents felt relief but at the same time a sorrow. When hearing aids had been fitted and education in sign language was under way, the child's language and social behaviour improved. Supposedly, the late detection is explained by the combination of an insufficient test method that cannot detect all children with a hearing impairment and, in cases of uncertainty, a tendency to let the child pass rather than "bringing bad news". All parents in the present study would have wished to participate in a hearing screening program for new-borns, had the opportunity been present.