When expectation meets experience: Parents’ recollections of and experiences with a child diagnosed with hearing loss soon after birth

Abstract

Objective: To examine parents’ recollections of and their experiences with bringing up a child diagnosed with hearing loss at a very young age. Design: Based on the analysis of informal parent discussion groups, four open-ended questions were formulated to solicit information about parents’ expectations following diagnosis, as well as experiences and challenges when raising a child with a hearing loss. Study sample: Forty parents of children, aged between three to five years, who were diagnosed with hearing loss before the age of three years. Results: Parents’ responses revealed strong support for early intervention, high expectations for their child's development, and desire for information tailored to individual needs. Parents also reported anxiety relating to their perceptions of the significance of consistent device usage on their child's development. Further concerns arose from their observations of the difficulties experienced by their child in real-world environments despite consistent device usage, and their perception of their child's language delay despite early intervention. Conclusions: The findings point to a need to support parents to form realistic expectations based on current knowledge. Implications for clinicians to provide improved management of children with hearing loss are discussed.

Key Words::

• Parents’ expectations
• childhood hearing impairment
• early intervention
• early diagnosis
• outcomes

Acknowledgements

We gratefully thank all the families for participation in this study. The project described was supported by Award Number R01DC008080 from the National Institute On Deafness And Other Communication Disorders. 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: We acknowledge the financial support of the Commonwealth of Australia through the establishment of the HEARing CRC and the Cooperative Research Centres Program. Support for this research was also provided by New South Wales Department of Health, Australia, Phonak Ltd., and the Oticon Foundation.

Notes

1. The “Choices” booklet is a publication distributed by the provider of hearing rehabilitation services in Australia. Current versions of the publication (and state-by-state supplements) can be accessed at http://www.hearing.com.au/fact-sheets.