A Scoping Review of the Ways Gatekeepers May Hinder or Promote Opportunities for People With Intellectual and/or Developmental Disabilities to Learn About Research Participation.
Gatekeepers are the hidden on-off switch for IDD research—educate and befriend them or stay locked out.
01Research in Context
What this study did
Brodeur et al. (2025) read 22 papers to map how gatekeepers help or block adults with IDD from joining research.
Gatekeepers are staff, family, or agency bosses who pass along study invites.
The team pulled out four levers: gatekeeper attitudes, knowledge, resources, and agency rules.
What they found
The review shows the same gatekeeper can either open or close the door.
When staff feel research is useless or worry about risk, they keep quiet.
When they trust the team and see clear benefits, they share the invite.
How this fits with other research
van der Miesen et al. (2024) counted that 78 % of UK health studies already lock out adults with IDD. Madison’s review explains why: gatekeepers cite consent fears and tight budgets.
Matson et al. (2011) told the story of one community study that died when caregivers refused. Madison’s wider scan shows this failure pattern is common.
Frankena et al. (2015) said inclusive health research is possible. Madison updates the playbook—focus on gatekeeper education and steady relationship-building.
Why it matters
If you run social-skills or job-skills studies, gatekeepers decide if participants ever hear your pitch. Build a one-page plain-language flyer that shows clear benefit, attach a five-minute phone script for staff, and schedule a coffee chat before recruitment starts.
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02At a glance
03Original abstract
BACKGROUND: Adults with intellectual and/or developmental disabilities are disproportionately excluded from participation in research, consequently increasing disparities experienced by this group. Gatekeepers, individuals who control access to research participation opportunities, may either support or pose a barrier to inclusion in research. We sought to understand how gatekeepers serve as supports and barriers to the participation of people with intellectual and/or developmental disabilities in research and the factors that may drive their actions. We also sought to identify approaches to interacting with gatekeepers that promoted the sharing of research participation opportunities. METHODS: We conducted a scoping review of manuscripts published between January 2009 and September 2024 describing gatekeeping during recruitment for adults with intellectual and/or developmental disabilities in social/behavioural research. We conducted content analysis of 22 manuscripts to identify 'gate opening' actions (actions that support research participation) and 'gate closing' actions (actions that pose a barrier to research participation) at the point of recruitment. We also identified approaches researchers took when interacting with gatekeepers to promote gate opening actions. RESULTS: Gatekeepers' attitudes (e.g., valuing research) and knowledge about prospective participants were associated with gate opening actions. Gatekeepers' attitudes of mistrust of researchers and/or research, deprioritisation of research and presumed incapacity of people with intellectual and/or developmental disabilities to consent to, participate in and/or benefit from research participation were associated with gate closing actions. Gatekeepers' lack of information (e.g., about research and prospective participants) was also associated with gate closing actions. Restrictive organisational policies and gatekeepers' lack of resources (e.g., time) were also associated with gate closing actions. Approaches for interacting with gatekeepers that may foster gate opening actions included: addressing gatekeeper concerns, educating gatekeepers about the benefits of research participation and developing relationships with gatekeepers. CONCLUSION: We identified several malleable factors that may drive gate opening and gate closing actions. Enhanced collaboration between researchers and gatekeepers may foster greater opportunities for individuals with intellectual and/or developmental disabilities to learn about research opportunities.
Journal of intellectual disability research : JIDR, 2025 · doi:10.1111/jir.13216