Summary
This talk aims to unpack the notion of participation used in participatory design research, by proposing a framework through which different levels of participation can occur at different stages of the research process. Drawing examples of work in child welfare and foster care, this framework is ultimately an invitation to challenge the notion that participation is binary (i.e., either research is participatory or isn't) or fixed (i.e., there is only one way participation can be done). Instead, participation is a negotiation that should take into account different factors (e.g., partners, resources, timeline), and could include a combination of different levels at different stages in any given research study.
Key Insights
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Participation should be understood as a continuum, not a binary or linear ladder.
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Degrees of participation can differ across various stages of research, from problem definition to dissemination.
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Embedding reflective feedback loops (the spiral model) is necessary but does not alone make research participatory.
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True participation involves ethical commitments beyond just engagement, such as trauma responsiveness and power shifting.
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Involving participants with lived experience, especially youth in foster care, improves the relevance and ethical grounding of research.
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Transparency in participant selection and clear communication helps build trust within marginalized communities.
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Review and validation by a lived expert board can counteract external power imbalances in research dissemination.
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Metrics for participatory research should avoid simplistic quantification to prevent misrepresenting participation quality.
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Research with foster youth faces temporal and developmental challenges, limiting longitudinal studies with minors.
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Participatory research is not inherently safe or non-exploitative without deliberate protocols and care ethics.
Notable Quotes
"Participatory research is the methodological toolkit that people point to to close the distance between researchers and communities."
"Youth, families, and communities impacted by foster care lose agency over their lives once they come into contact with the system."
"Arnstein’s ladder reduces participation to delegating decision-making power, ignoring safety, well-being, or satisfaction."
"The spiral model reminds us to constantly go back to participants and confirm that findings align with their experiences."
"Instead of asking if research is participatory, we should ask when and how participatory it is."
"Participation alone doesn’t guarantee ethical engagement or trauma responsiveness."
"We created a transparency memo video explaining the participant selection process to build trust."
"A lived expert review board helped guide report framing, dissemination, and post-research action."
"Just doing more sessions or involving more people isn’t a reflection of the quality of participation."
"Research with children under 14 in foster care has major ethical and developmental challenges we’re not equipped to handle."
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