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

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.