Abstract

BackgroundGlobally, there are over an estimated one billion people with disability. Research priorities with a focus on diagnosis and treatment of conditions or policy and service initiatives, traditionally decided by researchers, may not align with priorities of those with lived experience of disability. ObjectiveTo explore and inform disability research for Australia, including perspectives of people with disability. MethodsAs part of a research program, we used Q methodology to explore “what should guide the Australian research agenda?” People with disability, their families, community organizations and researchers were purposively recruited and sorted 25 statements, developed iteratively using data collated from systematic research mapping and a prior consultation process. The sorting grid ranged from -4 to +4, according to “Which topics should guide disability research the least to the most?” Factor analysis revealed four distinct but interrelated participant viewpoints. Results52 participants (65% female, aged 18-65+ years, 37% people living with disability), sorted the statements. Viewpoint 1 – design and delivery of services across the lifespan. Viewpoint 2 – understanding the diverse experience of those with disability. Viewpoint 3 – designing systems to address impacts of disability for the individual, their families and society. Viewpoint 4 – addressing mental health for those with disability no matter where they live. ConclusionThese viewpoints focused on design and delivery of services to address the impacts of disabling environments and attitudes on individuals living with impairments, their families and society. The four viewpoints provide a framework for future disability research in consultation with those with lived experience.

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