Facilitating the inclusion of adults with intellectual disability as direct respondents in research: Strategies for fostering trust, respect, accessibility and engagement

Background: Adults with intellectual disability experience disparities in social determinants of health and health outcomes. While new knowledge can advance health equity, adults with intellectual disability are frequently excluded from being direct respondents in research. Their inclusion requires addressing scientific and ethical challenges that contribute to their exclusion. Method: We describe our multi-phased process, inclusive of community-engagement, to develop a self-report survey for adults with intellectual disability and share findings from an institutional ethnography conducted to identify strategies for facilitating inclusion. We also assessed indicators of the quality of these strategies. Results: We identified building trust, showing respect, designing in accessibility, maximising flexibility and allowing individualised accommodations as strategies that foster inclusion. Multiple indicators validate the effectiveness of these strategies. Conclusions: Researchers can promote first-person decision-making and direct research participation by focusing on promoting accessibility, trust, respect and engagement.