Participatory research design

This research aims investigate ways to improve rates of direct participation of people living with dementia in aged care consultation using inclusive and innovative research approaches (Phillipson & Hammond, 2018). It will use a range of qualitative methods including participatory action research (Cornish et al., 2023), ethnography (Phillipson & Hammond, 2018) and discourse analysis (Lupton, 1992), which are appropriate methods to investigate and address issues of structural marginalisation and epistemic injustice in the Australian aged care system. Respectful of responsible and reflective research practices, this also promotes relational over extractive approaches in socio-legal dementia research (Cornish et al., 2023; Ward & Sandberg, 2023).

Within each aged care site, an Action Group will be formed to participate with the research team in ‘look and listen, think and discuss, take action’ activities (Smith & Phillipson, 2021). The project will promote knowledge translation of dementia research through activities that build new knowledge (key interview and action research cycles), strengthen research and community relationships (action group, Advisory Group and multidisciplinary workshop), share and educate knowledge resources (website, report/briefing paper) and inform experts, government and industry policy and practices (principles/resources, research publications).

The project will collaborate with residents, family and staff to identify existing opportunities or mechanisms that should represent the voice and experiences of people living with dementia and ask what changes or actions (ie using innovative approaches) can be made to bring that voice in?

Figure: Cornish et al, 2023 https://doi.org/10.1038/s43586-023-00214-1