title: Does parental experience of the diagnosis and intervention process differ for children with auditory neuropathy?
abstract: OBJECTIVE
  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.
authors.affiliation: Department of Speech-Language Pathology and Audiology, University of Pretoria, South Africa.
authors.forename: Deidré
authors.initials: D
authors.lastname: Stroebel
authors.affiliation: Department of Speech-Language Pathology and Audiology, University of Pretoria, South Africa; Ear Sciences Centre, School of Surgery, University of Western Australia, Nedlands, Australia; Ear Science Institute Australia, Subiaco, Australia. Electronic address: dewet.swanepoel@up.ac.za.
authors.forename: De Wet
authors.initials: de W
authors.lastname: Swanepoel
mesh_terms: D016022:Case-Control Studies; D002648:Child; D002675:Child, Preschool; D019929:Cochlear Implantation; D003657:Decision Making; D005260:Female; D007722:Health Knowledge, Attitudes, Practice; D006310:Hearing Aids; D006313:Hearing Loss, Central / Q000175:diagnosis* / Q000628:therapy*; D006319:Hearing Loss, Sensorineural / Q000175:diagnosis / Q000628:therapy; D006801:Humans; D007223:Infant; D008297:Male; D010290:Parents; D010353:Patient Education as Topic; D011795:Surveys and Questionnaires; D035501:Uncertainty
keywords: Auditory neuropathy spectrum disorder; Cochlear implant; Diagnostic audiology; Sensory neural hearing loss