Journal article
K. Moes, J. Rees, S. Laws, D. Blacker, M. Clark, T. Cruickshank, R. Yan
[under review]
[under review]
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APA
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Moes, K., Rees, J., Laws, S., Blacker, D., Clark, M., Cruickshank, T., & Yan, R. Co-Designing the Co-Design: Perspectives of People with Parkinson's Disease on Participatory Research Engagement.
Chicago/Turabian
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Moes, K., J. Rees, S. Laws, D. Blacker, M. Clark, T. Cruickshank, and R. Yan. “Co-Designing the Co-Design: Perspectives of People with Parkinson's Disease on Participatory Research Engagement” (n.d.).
MLA
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Moes, K., et al. Co-Designing the Co-Design: Perspectives of People with Parkinson's Disease on Participatory Research Engagement.
BibTeX Click to copy
@article{moes-a,
title = {Co-Designing the Co-Design: Perspectives of People with Parkinson's Disease on Participatory Research Engagement},
address = {[under review]},
author = {Moes, K. and Rees, J. and Laws, S. and Blacker, D. and Clark, M. and Cruickshank, T. and Yan, R.}
}
Abstract:
Co-design is widely advocated in research, but the design of co-design processes is rarely treated with the same participatory rigour as co-design itself.
This paper draws on semi-structured interviews with fifteen Western Australians living with Parkinson's disease (PD) to argue for a dedicated pre-design ideation stage in which the community helps shape the research process before workshops are convened.
Reflexive thematic analysis generated four themes: design expertise and process knowledge; access and logistical requirements; group composition and diversity; and participant expectations beyond the immediate research task.
Participants held considered views about what good co-design should encompass, views that are rarely sought before the process begins.
Framing community members as contributors of design knowledge, rather than only as informants about their experience, changes what a pre-design ideation stage is designed to elicit and, by extension, the quality of the co-design that follows.
This paper draws on semi-structured interviews with fifteen Western Australians living with Parkinson's disease (PD) to argue for a dedicated pre-design ideation stage in which the community helps shape the research process before workshops are convened.
Reflexive thematic analysis generated four themes: design expertise and process knowledge; access and logistical requirements; group composition and diversity; and participant expectations beyond the immediate research task.
Participants held considered views about what good co-design should encompass, views that are rarely sought before the process begins.
Framing community members as contributors of design knowledge, rather than only as informants about their experience, changes what a pre-design ideation stage is designed to elicit and, by extension, the quality of the co-design that follows.
Plain English Summary:
When researchers plan studies with communities, they usually design the process first and then invite people to take part. This paper argues that this can miss something important about what people living with health conditions think good research should look and feel like, and those views are rarely asked for before decisions are made.
As part of a larger study about food and eating behaviours, fifteen people living with Parkinson's disease (PD) in Western Australia were asked about their wants, needs, and expectations around taking part in co-design research.
We found out that people with PD had clear views about group size, facilitation, timing, format, and transport. They described how PD experiences change with age, disease stage, and household context, and why a one-size-fits-all approach was unlikely to work. Participants also told us they wanted to connect with others, share learning, and influence research decisions.
These findings suggest that the design of co-design itself needs community input before it begins. Asking people with lived experience how they want to be involved before the process is planned helps co-design to be genuinely accessible.
As part of a larger study about food and eating behaviours, fifteen people living with Parkinson's disease (PD) in Western Australia were asked about their wants, needs, and expectations around taking part in co-design research.
We found out that people with PD had clear views about group size, facilitation, timing, format, and transport. They described how PD experiences change with age, disease stage, and household context, and why a one-size-fits-all approach was unlikely to work. Participants also told us they wanted to connect with others, share learning, and influence research decisions.
These findings suggest that the design of co-design itself needs community input before it begins. Asking people with lived experience how they want to be involved before the process is planned helps co-design to be genuinely accessible.