Table 2 Recommendations and Examples for University Researchers to Increase Inclusion of Participants with Intellectual Disability
Recommendation | Examples |
|---|---|
1. Address the Knowledge Gap | •Explicitly describe inclusive strategies used to successfully include individuals with intellectual disability •Identify inclusion of individuals with intellectual disability in all study dissemination •Identify the capabilities and contributions of individuals with intellectual disability through dissemination |
2. Build Community Partnerships | •Connect with community organizations or providers who serve individuals with intellectual disability •Identify opportunities for mutually beneficial partnerships between research and community stakeholders |
3. Use Plain Language | •Simplify language across all research documents and materials •Use a glossary in the document to define complex words that cannot be simplified Resource: glossary of plain language definitions for common health and research terms (Additional file 1) |
4. Simplify Consent (and Assent) Processes | •Create consent and assent forms that are written in plain language, include simple images or diagrams when possible, and are succinct •All consent and assent forms should be formatted using principles of universal accessibility [51] •Use a companion document (e.g., Additional file 2) to support understanding of the consent and assent process •Include additional stakeholders (e.g., caregivers, trusted friends, family) to support trust and informed consent •Obtain both informed consent and informed assent when applicable Resource: Understanding Consent and Assent in Plain Language summary (Additional file 2) |
5. Establish Research Capacity to Consent | •Only assess understanding as relevant to the current study •Assess understanding through questions to confirm understanding and informed consent •Avoid the use of standardized cognitive measures (e.g., mini mental status exam) to assess the capacity of a person to provide consent |
6. Offer Universal Supports and Adaptations | •Choose research locations that are accessible (e.g., ramps, elevators, accessible bathrooms) •Look for locations with easy access to public transportation (e.g., on a public transit route, available parking, signage) •Offer transportation to participants •Make accommodations available to all participants throughout research procedures •Provide information in multiple formats (accessible printed materials, assistance offered for reading or writing). •Individuals should determine the supports they would like to receive. Resource: Supports I Need Checklist (Additional file 3) |
7. Practice Accessible Dissemination | •Utilize the Easy-Read paper template to create accessible summaries of published findings •Identify alternative formats that are easily accessed by a broad audience (e.g., newsletters, videos, social media postings, and summaries of academic papers) Identify other outlets for disseminating to community audiences (e.g., community presentations, social media posts and videos) •Include self-advocates and community partners in the dissemination process whenever possible Resource: Easy-Read Paper Template (Additional file 4) |