Magnuson M, Hergils L
Department of Education and Psychology, Linköping University, Linköping, Sweden.
Patient Educ Couns. 2000 Oct-Nov;41(3):285-94. doi: 10.1016/s0738-3991(99)00117-2.
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.
本调查的目的是描述父母如何经历孩子听力障碍的延迟诊断。采访了8名儿童的10位家长。这些孩子在2岁至5岁8个月之间被确诊为听力障碍。结果显示，家长和孩子经历了一系列不同的阶段： unaware（未察觉）、怀疑、确诊和 habilitation（康复训练）。孩子出生后首先有一段平静期，一直持续到对听力障碍的可能性产生怀疑。一旦产生怀疑，随之而来的是一段焦虑和沮丧的时期。家长们描述了沟通障碍和误解是如何导致他们与孩子频繁发生冲突的。孩子不同的行为，再加上语言发展迟缓，促使他们寻求听力评估并确诊听力障碍。确诊后，家长们感到如释重负，但同时也感到悲伤。当佩戴了助听器并开始进行手语教育后，孩子的语言和社交行为得到了改善。据推测，延迟诊断是由于检测方法不足，无法检测出所有听力障碍儿童，以及在存在不确定性的情况下，倾向于让孩子通过而不是“带来坏消息”。如果有机会，本研究中的所有家长都希望参加新生儿听力筛查项目。
