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.

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