‘Where’s the Support for Us?’: Exploring the Lived Experiences of Significant Others Who Care for People with Disability in Australia

Significant others—family members, friends, and informal carers—play a vital yet underrecognised role in supporting people with disability in Australia. This study aimed to explore their lived experiences and identify systemic barriers impacting their well-being and caregiving capacity. A total of 188 significant others participated in a statewide survey, co-designed using inclusive research principles. Quantitative and qualitative data were collected and analysed collaboratively, using an a priori coding framework adapted to new themes. Four key findings were described: the joy and meaning found in caregiving; the overwhelming burden of navigating fragmented systems; the erosion of carer well-being due to financial, physical and emotional strain; and the urgent need for systemic support including respite and equitable access to services. Participants emphasised that caregiving itself was not inherently burdensome, rather, the lack of formal support and recognition creates unsustainable conditions. These findings highlight the critical role significant others play in sustaining Australia’s care economy and underscore the need for disability-inclusive policy reform. Strengthening support systems and embedding lived experience into reform and policy design are essential to ensuring the long-term sustainability of informal care and the rights and well-being of both carers and people with disability.