Researching Parkinson’s dance collaboratively: the relational ethics of including citizens as co-researchers

Person (or patient)-centeredness has become a central principle of health policy in many countries. Placing the person in the “centre” entails that the value of experience-based knowledge is recognized and that citizens/patients/clients participate as co-producers in organizational development, individual treatment and collaborative, participatory research. According to the literature, there are many challenges in enacting person-centeredness. This presentation aims to contribute to research approaches to the challenges in participatory research by illustrating the use of a particular approach in the research project, Dancing with Parkinson’s.
In the project, 43 participants in Parkinson’s dance classes (people with Parkinson’s disease and partners) take part as co-researchers, together with three university researchers, in a series of workshops designed to make space for co-creating knowledge across a plurality of voices, articulating bodily, aesthetic, visual and narrative ways of knowing. The approach is based on a theoretical framework that, combining Bakhtin’s theory of dialogue and Foucault’s theory of power/knowledge and discourse, theorizes challenges in collaborative research relations as tensions intrinsic to power-imbued meaning-making across different voices.
The approach builds on relational ethics – an ethical foundation for research relations– in integrating critical, reflexive analysis of the tensions into the research process. How can the tensions in participatory, collaborative research relations be tackled through a reflexive approach to relational ethics - in Bakhtin’s terms, “an ethics of dialogue”? This question will be addressed through analysis of three meetings of the steering and advisory groups and three co-creative workshops. Finally, the presentation will discuss the (de)limitations of the approach.