Whose Research Is This? - Participatory Secondary Data Analysis with People Living with Dementia

Drawing on our approach and findings from a secondary interrogation of an existing qualitative dataset, this work set out to challenge assumptions of practice through using participatory methods. Our approach brought two key aspects together: applying the theories of Douglas’ Cultural Risk Theory and Toronto’s Ethic of Care; and a collaboration with people living with dementia as coanalysts in the coproduction (interpretation) of knowledge and representing the experiences within the qualitative dataset. The research generated an understanding of relational care and the subtle ways in which relationships change for someone with dementia. In this paper we describe the processes we followed and reflect on the demands and challenges, experienced as researchers, in focusing on reflexivity, multiple voicing, literary styling and performance. In our description of how we had to relinquish any sense of a concluding authoritative voice we highlight the innovation in this participatory secondary data analysis and encourage others to engage with this dialogue.