Community-Based Participatory Research to Adapt Health Measures for Use by People With Developmental Disabilities.

Area of Science:

• Health research methodology
• Disability studies
• Community-based participatory research

Background:

• Individuals with developmental disabilities (DD) face significant barriers to research participation.
• Traditional measurement tools often lack accessibility for people with DD.
• Participatory research can enhance inclusion but has seen limited success in quantitative studies with people with DD.

Purpose of the Study:

• To develop an accessible, computer-assisted survey on violence and health for people with DD.
• To employ a community-based participatory research (CBPR) approach.
• To psychometrically evaluate adapted health instruments for this population.

Main Methods:

• An academic-community partnership, including individuals with DD, collaboratively adapted data collection instruments.
• Cognitive interviews and pilot testing were conducted.
• A full survey was administered to 350 people with DD.

Main Results:

• Instruments were successfully adapted for participants with diverse DD, despite differing needs.
• Adapted instruments demonstrated strong content validity and good to excellent internal consistency reliability (alpha = 0.81-0.94).
• 75% of participants found the survey questions easy to understand.

Conclusions:

• Participatory methods are effective for adapting research instruments.
• Adapting instruments using these approaches allows for the valid inclusion of people with DD in research.
• Researchers should consider participatory approaches to enhance research accessibility for marginalized groups.