Reflections From Co-Researchers With Intellectual Disability: Benefits to Inclusion in a Research Study Team.
Hiring adults with ID as co-researchers works well and benefits everyone involved.
01Research in Context
What this study did
Five adults with intellectual disability joined a university research team as paid co-researchers.
They helped plan the study, collect data, and share results about inclusive research methods.
Staff kept field notes and ran group interviews to learn how the co-researchers felt about the work.
What they found
Every co-researcher said they gained new skills like public speaking and using computers.
They also felt proud, made friends, and liked earning a paycheck.
University staff said the work ran smoothly and the team got richer data because of the co-researchers' ideas.
How this fits with other research
Robertson et al. (2013) asked adults with ID what they want from research. They said "let us speak" and "make it useful." Thompson et al. (2018) shows one clear way to honor that wish: hire them as teammates.
van der Miesen et al. (2024) found that 78 % of UK health studies still lock out adults with ID. That looks like a clash with Thompson et al. (2018), but the difference is the study type. Routine health trials use tight protocols and quick visits. Participatory research builds in extra time and support, so inclusion is easier.
Timmons et al. (2011) also used one co-researcher withlectual disability in an employment study. Thompson et al. (2018) moves beyond a single helper to a full team of five, showing the model can scale.
Why it matters
If you run assessments or program evaluations, invite one or two clients with ID to join your team. Give them real jobs like greeting participants, taking photos, or co-leading focus groups. You will gain deeper insights and the clients will gain skills and pride. Start small and pay them for their time.
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02At a glance
03Original abstract
Participatory action research methodologies may empower and protect marginalized individuals; however, they remain underutilized. Limited studies have investigated the impact of participatory action research, specifically on individuals with intellectual disability (ID). This study examines (1) the perspectives of co-researchers with ID on their involvement in the research process and (2) the feasibility of their inclusion based on perspectives of research staff (academic faculty and graduate students without ID). Three co-researchers with ID were interviewed regarding their research participation. Thematic analysis of interviews identified four themes: (1) Shared Experience of Disability, (2) Teaching and Guidance, (3) Acquisition of Skills and Knowledge, and (4) Value of Participation. Research staff reviewed field notes and identified benefits and challenges to feasibility of including co-researchers with ID. Inclusion of co-researchers with ID was found to be both meaningful and feasible.
Intellectual and developmental disabilities, 2018 · doi:10.1111/j.1468-3156.1999.tb00085.x