A toolkit for accessible and respectful engagement in research

Abstract

Social, scientific, and ethical factors underscore the value of respectfully including people with intellectual/developmental disabilities in research despite significant barriers to their research participation. In pursuit of this goal, we worked with two research advisors with intellectual/developmental disabilities to develop a qualitative study toolkit emphasizing accessibility, flexibility, variety, and responsiveness. The toolkit includes procedures and materials for recruitment, consent, interview locations and questions, breaks, and incentives. We recommend that future research utilizes insights of individuals with intellectual/developmental disabilities in research that impacts their lives, and that researchers systematically improve the use of procedures and toolkits.

Keywords:

• research ethics
• inclusion of minority groups
• disability
• research participation

Acknowledgements

This research was supported by a grant to the second author from Oregon Health Sciences University’s Medical Research Foundation and was conducted while she was at Portland State University. The views expressed herein are those of the authors and not necessarily the funder. The authors convey appreciation to our participants and those who assisted us in finding them. They also thank Sandra Nelms, Marilyn Petruzzelli, and Jerry Reid for their assistance.

Notes

1. See our explanation for the use of this term where we discuss language in the later section ‘Products of our Collaboration: Our Research Toolkit’.

2. The hourly wage, number of hours, and duration of the job was not a sufficient amount of income in the United States to jeopardize government benefits.

3. In many cases, the picture communication symbols are from Boardmaker^®. Boardmaker^® is a trademark of Mayer-Johnson LLC. For more information, see DynaVox Mayer-Johnson, 2100 Wharton Street, Suite 400 Pittsburgh, PA 15203, phone: [phone], fax: [phone], email: [email protected], web site: www.mayer-johnson.com.