J Appl Res Intellect Disabil. Sep 24, 2021. doi: 10.1111 / jar.12936. Online ahead of print.

ABSTRACT

BACKGROUND: Adults with developmental disabilities experience disparities in the social determinants of health and health outcomes. While new knowledge can advance health equity, adults with developmental disabilities are often excluded from the role of direct respondents in research. Their inclusion requires addressing the scientific and ethical challenges that contribute to their exclusion.

METHOD: We describe our multi-phase process, including community engagement, to develop a self-report survey for adults with developmental disabilities and share the results of an institutional ethnography conducted to identify strategies to facilitate development. inclusion. We also evaluated indicators of the quality of these strategies.

RESULTS: We identified building trust, respect, design in accessibility, maximizing flexibility and the possibility of individualized adaptations as strategies that promote inclusion. Multiple indicators validate the effectiveness of these strategies.

CONCLUSIONS: Researchers can promote first-person decision-making and direct participation in research by focusing on promoting accessibility, trust, respect, and engagement.

PMID: 34559449 | DOI: 10.1111 / pot.12936