‘This isn't good enough’: Aboriginal caregivers’ perspectives on the pathways to support young children with otitis media and related hearing problems

<h2>Abstract</h2><h3>Purpose</h3> This qualitative study aimed to explore the perspectives of Aboriginal parents and caregivers of children who have had ear health and hearing problems on: 1) supporting their children's hearing health and language development; and 2) their experiences of ear health and hearing pathways, including audiology and speech language pathology (SLP) services. This study privileged the lived experience of Aboriginal caregivers to help health professionals and service providers understand more about how to build on family strengths. <h3>Methods</h3> An Aboriginal research leadership team provided oversight for the study. Interviews were conducted with Aboriginal caregivers using the yarning method, an Indigenous research method, to privilege the voices of caregivers and prioritise relationality. Interviews were transcribed then analysed using reflexive thematic analysis, with project team collaborative yarning used to construct the final themes. <h3>Main findings</h3> Interviews were conducted by an Aboriginal researcher with five Aboriginal caregivers in an inner regional urban New South Wales community and by non-Indigenous researchers with three Aboriginal caregivers in two remote Northern Territory communities. Three key themes were identified across the interviews: 1) Problematic pathways; 2) Caregivers having to be proactive; and 3) Caregiver recommendations. Sub-themes identified for theme 1 were: siloed services; lack of (appropriate) services; lack of clear messaging. Sub-themes identified for theme 2 were: advocating for their child; implementing strategies; finding help; advocating for other families. Sub-themes identified for theme 3 were: regular checks; more services; culturally respectful services; more information and education. <h3>Principal conclusions</h3> Given the complexity of ear health and hearing pathways, Aboriginal caregivers had to strongly advocate for their children and other children in their communities. Consistent with previous studies, this suggests that significant changes are needed to support caregiver proactivity and ensure that the onus does not continue to solely rest on caregivers. Caregivers in this study described using a range of prevention and support strategies with their children with ear and hearing problems and provided recommendations for health services. Healthcare professionals can build on these strengths to assist families (including while they wait for specialist services) in ways that are culturally responsive and family centred.