Our study aimed to explore the perspectives of Aboriginal and Torres Strait Islander caregivers of young children with hearing problems on 1) how they support their children’s hearing health and language development; 2) on audiology and speech pathology services.
With oversight from an Aboriginal Research Leadership Team, led by a Wiradjuri researcher Michelle Kennedy, our study aimed to privilege the voices and experiences of Aboriginal and Torres Strait Islander caregivers.
In the semi-structured interviews using the yarning method, caregivers shared stories of advocating for and supporting their children’s ear health, hearing, and language development. It is clear from the interviews how proactive caregivers were—and had to be—in order to detect problems, to seek diagnoses and support, and to advocate for their children. They also described advocating for and supporting other families, strategies they used to support their children’s hearing health and language development and help they had received, particularly from family and friends. However, they described numerous challenges including being dismissed by health professionals, difficulties accessing support (including long wait times), navigating complex support pathways, supporting their child with other health issues, and the impacts of hearing health issues on their child and family. Caregivers’ suggestions to improve support pathways included providing caregivers with more information about otitis media (OM) and related hearing loss, and support service pathways (e.g., in leaflets, videos, an app, information sessions, community meetings); having regular ear health and hearing checks; and ensuring that hearing screening links to health records.
Caregivers reported both positive and negative experiences with audiology and speech pathology services. They had numerous suggestions for improving these services, including the need for more services (or more regular visiting services); more information for caregivers about the process of hearing or speech assessments and the time involved before appointments (e.g., over the phone or email when they book as well as explanations by service providers and/or support staff before assessments begin); services having Aboriginal support staff; and the need for all staff to have understanding and respect for families to ensure that services are culturally safe.