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

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.

Key Words:

• Paediatric
• psycho-social/emotional
• cochlear implant
• hearing aids

Acknowledgements

We gratefully thank all the families who participated in this study. This work was partly supported by the National Institute on Deafness and Other Communication Disorders (Award Number R01DC008080). The project was also partly supported by the Commonwealth of Australia through the Office of Hearing Services. We acknowledge the financial support of the HEARing CRC, established and supported under the Cooperative Research Centres Program of the Australian Government.We also thank Vicky Zhang for her assistance in preparing Tables 1 and 2. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institute on Deafness and Other Communication Disorders or the National Institutes of Health.

Declaration of interest

The authors report no conflicts of interest. The authors alone are responsible for the content and writing of this article.

Additional information

Funding

This work was partly supported by the National Institute on Deafness and Other Communication Disorders (Award Number R01DC008080). The project was also partly supported by the Commonwealth of Australia through the Office of Hearing Services. We acknowledge the financial support of the HEARing CRC, established and supported under the Cooperative Research Centres Program of the Australian Government.