National Disability Insurance Scheme and Lived Experience of People Presenting to the Emergency Department: Protocol for a Mixed Methods Study

BACKGROUND: Currently, within Australia, 3.6% of all emergency department (ED) presentations are mental health–related. Information about the context of the person presenting to the ED (beyond immediate needs), including their psychosocial disability (PSD) National Disability Insurance Scheme (NDIS) plan, is reported as incomplete and fragmented. There are missed opportunities for early support and care continuity that could potentially inform ED practitioners to revise current practices. OBJECTIVE: The aims of this study are: (1) to obtain original data from the lived experience voice of those with the PSD NDIS plan and their experience when presenting to an ED, (2) to gather information from NDIS service providers to reveal communication pathways between the ED and NDIS services, and (3) to gain knowledge from ED clinicians around processes for improving continuity of care and consumer experience. METHODS: This inductive, mixed methods phenomenological study will involve data collection analyzed sequentially, with each stage informing future stages of the research. Interviews will focus on the lived experience voice exploring concerns that have led to an ED presentation, alongside an analysis of associated clinical and administrative documentation and communications. Focus groups with NDIS support workers and support coordinators will provide phenomenological data around the experience from their perspective. National quantitative surveys among those with a PSD NDIS plan and emergency services clinicians will provide insight into current practices within community care and ED presentations. The research project design includes a lived experience advisory group who are assisting with the design of the interview and focus group schedules and national surveys, as well as in shaping the interpretation of qualitative information. All transcripts will be subject to thematic analysis to understand individuals’ meaning-making of these complex and particular phenomena. The research team includes a lived experience researcher and a lived experience carer (PhD candidate). RESULTS: This study is funded by MIND Australia as a PhD industry scholarship, which commenced in April 2020. A systematic review as a preresearch activity has been completed and is currently under review. The Human Research Ethics Committee of the University of South Australia has approved this project. An advisory group has been selected, and interview, focus group, and survey schedules are currently being codesigned. Recruitment will commence in November 2021. It is envisaged that data collection will be completed by June 2022. CONCLUSIONS: Understanding the lived experience of the precare, during care, and postcare stages of ED presentations from the perspective of those with a PSD NDIS plan will inform the research team around current practices and provide information about improvement for pathways of care for consumers and carers, while also informing health policy. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): PRR1-10.2196/33268