Improving Methods for Conducting Research with People with Cognitive Disabilities in Virtual Environments

Cheerful young businesspeople with laptop working in office, social inclusion and cooperation

Little is known about the most effective and accessible ways to engage people with intellectual and developmental disabilities (IDD) in remote, virtual research. The purpose of this work is to conduct research toward the development of rigorous research methods and approaches that can be used in virtual environments to enable people with IDD to share valid, reliable, and meaningful data about their experiences and outcomes. 

The aims for this project are to:

  1. Identify, vet, develop, and document effective virtual research methods alongside the IDD community through literature reviews, interviews, surveys, assistive technology labs, and virtual World Cafes.
  2. Develop and validate a virtual method for conducting surveys using the Consumer Assessment of Healthcare Providers & Systems Home and Community-Based Services survey, used by the Centers for Medicare & Medicaid Services in English and Spanish.
  3. Develop, identify, and disseminate how-to resources based on project findings. The chief expected product is an online toolkit housing three modules for a) researchers; b) people with IDD; and c) caregivers and support professionals for people with IDD.

Long term outcomes of this research include increased opportunities for people with IDD to engage in and lead remote, virtual research. Researchers and other relevant stakeholders will learn the most effective and accessible ways to conduct remote, virtual research. Further, the field will gain a greater understanding of how people with IDD experience care through increased inclusion in national data collection efforts.