Doing, Being and Knowing Intracranial Hypertension
This first large-scale study of Intracranial Hypertension from the first-person perspective centres the experiential expertise of 563 adults with IH to complicate and expand the dominant medicalised perspective of the condition.
A multidisciplinary project focused on first-person perspectives and co-design of targeted interventions to address issues around meals/eating, including impacts from cognitive, movement, and social factors common in people with neurological disability.
An ECU Centre for Precision Health project co-developing a world first digital health platform, that will help people living with a neurological condition navigate their life journey with confidence.
Disability, Society and Culture
A collaborative scholarly project developed through the Disability Studies Working Group at Curtin University, to collectively develop a handbook that covers key theoretical frameworks across a range of disability models and approaches
Sleep Environment in FIFO Mining Workers: A Lived Experience Perspective
A qualitative study examining the sleep environment in fly-in, fly-out (FIFO) mining camps from the perspectives of the workers who live and sleep in them, supporting health and wellbeing in remote work settings.
Digital Citizenship and Disability Rights
Drawing on evidence submitted to the Australian Disability Royal Commission, this project examines what people with disability reported about their experiences of digital access and inclusion.
Hidden World of HD: Using Photovoice to Capture Hidden Aspects of Huntington's Disease
A photovoice project that invites people living with Huntington's disease to document and share aspects of their experience that are rarely visible in clinical or research settings. The project centres participant knowledge as both method and evidence.
From Listening to Dancing with People with Functional Neurological Disorder
A lived experience research project exploring the perspectives of people with Functional Neurological Disorder, with a focus on understanding daily life, healthcare navigation, and what meaningful support looks like for this often-misunderstood condition.
Smile-HD: Oral Health and Huntington's Disease
A qualitative research project examining the lived experience of oral health concerns and their management among people with Huntington's disease, with the goal of informing more responsive clinical care and support.