The parents' perspective of the early diagnostic period of their child with hearing loss: information and support

Int J Audiol. 2018 May;57(sup2):S3-S14. doi: 10.1080/14992027.2017.1301683. Epub 2017 Mar 23.

Abstract

Objective: This study aimed to explore the perspectives of caregivers regarding the information and support they received following diagnosis of their child's hearing loss.

Design: A mixed methods explanatory sequential design was conducted.

Study sample: A total of 445 caregivers of children completed a written survey, and five parents participated in qualitative in-depth interviews.

Results: The most common sources of information for caregivers were discussion with an audiologist, written information, and discussion with a medical professional. Approximately 85% of caregivers reported they were satisfied with the personal/emotional support and information received from service providers. Additional comments from 91 caregivers indicated that 11% experienced a breakdown in information transfer with health professionals. Interviews conducted with five parents from three families revealed two themes which described the diagnostic period as a difficult and emotional experience for parents: (1) support and information provided during diagnosis: what happens first? and (2) accessing early intervention services following a diagnosis of hearing loss: navigating the maze.

Conclusions: The findings of this study give insight into the perspectives of caregivers who have a child diagnosed with hearing loss. The importance of providing timely information and personal/emotional support to caregivers cannot be underestimated.

Keywords: Paediatric; cochlear implant; hearing aids; psycho-social/emotional.

Publication types

  • Research Support, N.I.H., Extramural
  • Research Support, Non-U.S. Gov't

MeSH terms

  • Adaptation, Psychological*
  • Australia
  • Caregivers / education
  • Caregivers / psychology*
  • Child
  • Child, Preschool
  • Cochlear Implants
  • Disabled Children / psychology
  • Disabled Children / rehabilitation*
  • Early Diagnosis
  • Early Medical Intervention / methods*
  • Emotions
  • Female
  • Health Care Surveys
  • Health Communication*
  • Health Knowledge, Attitudes, Practice*
  • Hearing
  • Hearing Aids
  • Hearing Loss / diagnosis
  • Hearing Loss / physiopathology
  • Hearing Loss / psychology
  • Hearing Loss / rehabilitation*
  • Hearing Tests
  • Humans
  • Infant
  • Interviews as Topic
  • Longitudinal Studies
  • Male
  • Parents / education
  • Parents / psychology*
  • Persons With Hearing Impairments / psychology
  • Persons With Hearing Impairments / rehabilitation*
  • Professional-Family Relations
  • Qualitative Research
  • Social Support