Does parental experience of the diagnosis and intervention process differ for children with auditory neuropathy?

OBJECTIVES This study compared parental experience of the audiological diagnosis and intervention process in children with auditory neuropathy spectrum disorder and sensory neural hearing loss. METHODS A matched group survey was used with parents of children with auditory neuropathy spectrum disorder (ANSD) matched with a control group of parents and children with sensorineural hearing loss (SNHL). The two groups were matched in terms of the child's gender, age, amplifications used, social background and utilisation of private or public health care sectors. An interview questionnaire, consisting of 45 questions in six categories (1. biographic information, 2. experiences of audiological diagnosis, 3. hearing aid benefit, 4. parental experience of the rehabilitation decision making process, 5. parental needs for emotional support and 6. parental needs for information) using a 5-point Likert scale for categories 2-7, was administered by the same audiologist. RESULTS Children with ANSD experienced a significantly longer waiting period from diagnosis to hearing aid fitting (p=0.025) and/or cochlear implantation (p=0.036). Parents of children with ANSD reported significantly different experiences of the diagnostic process (p=0.001) with poorer understanding of the diagnosis and reporting insufficient time allowed for asking questions. During the rehabilitation decision-making process 47% of parents with ANSD children (vs. 0% of parents with SNHL children) reported receiving conflicting information. Parents of children with ANSD were also less likely to recommend hearing aids to other parents. Information needs were similar between groups. CONCLUSIONS Parents of children with ANSD have different experiences and greater uncertainty during the diagnostic and rehabilitation process. Providing regular consultation and structured timelines through the diagnostic process and decision-making process may facilitate this process with less uncertainty.