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 in research should be viewed as a continuum across different stages and degrees, not a binary or single ladder.
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Arnstein's ladder of participation, while influential, oversimplifies participation by focusing mainly on power transfer and neglecting safety, well-being, and other goals.
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The spiral model of participatory action research adds a temporal dimension emphasizing ongoing reflection and participant feedback throughout the project.
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Meaningful participation requires more than just involving people; it demands trauma-responsiveness, safety, mutuality, compensation, and avoiding tokenism.
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Mapping degrees and sites of participation creates diverse assemblies unique to each research project, highlighting complexity and flexibility.
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Involving people with lived experience as research team members enhances study design, recruitment, data interpretation, and dissemination.
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External academic peer review can exert power that conflicts with participatory research goals, so forming a lived expert review board can rebalance power.
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Metrics quantifying the quantity of participation (e.g., number of sessions or participants) risk misrepresenting the quality and ethics of engagement.
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Longitudinal research with foster youth faces ethical and practical challenges, especially around consent and developmental readiness, often limiting study scope.
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Participation should be considered an ethical commitment, but it must be complemented by care ethics and trauma-informed practices to avoid harm.
Notable Quotes
"Youth, families, and communities impacted by the child welfare system experience a lot of loss of control, with important aspects of their lives decided without their input."
"Participation is one way to minimize loss of control and allow people to exercise their agency and autonomy."
"Arnstein’s ladder reduces participation to delegating decision-making power, ignoring goals like safety, well-being, and satisfaction."
"The spiral model introduces temporality—constantly going back to participants to confirm outcomes align with goals."
"Instead of asking if research is participatory or not, we should ask when and how participatory the research is."
"Participatory research doesn’t inherently prevent harm or power differentials; it just engages more people in the process."
"Just because you do more sessions or add review moments doesn’t mean the quality of engagement improves."
"We formed a lived expert review board to support framing conclusions and decisions, rebalancing power from academic peer reviewers."
"Many ethical and practical issues prevent us from conducting longitudinal research with children under 18 in foster care."
"Participation is an ethical commitment but should be complemented by an ethic of care, valuing people’s time and being trauma responsive."
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