Plain Language Summaries for Publications

Carli Friedman

UCEDD Trainee and former LEND Trainee

Doctoral Candidate, Disability Studies

University of Illinois at Chicago

Kate Caldwell

Former LEND and UCEDD Trainee

Postdoctoral Research Fellow, CEED Project

University of Illinois at Chicago

In many fields it is almost impossible not to use jargon. For example, The CEED Project is working to bridge the fields of disability studies and entrepreneurial studies to provide entrepreneurship education and training to service providers and people with disabilities. Accordingly, we often find ourselves having to use terms, phrases, and acronyms from both disability and business. However, this can make the work we are producing inaccessible to people with intellectual and developmental disabilities (I/DD). It also makes it hard for their family and caregivers to understand the results of our research, particularly if they have lower-literacy levels or use English as a second language. Accessible plain language summaries of publications provide individuals with something they can print out that is easy to understand, and which they can use in advocating and talking to policymakers.

The goal of this approach to knowledge translation is to break down complex concepts into the most essential form by using plain language and universal design so that the widest possible audience will be able to understand it -- including people with I/DD. Technical and academic language can be an access barrier for many people with and without disabilities. As such, it is important to use knowledge translation to bring research back to the community, especially to the very audience who are the subjects of the research.

To make plain language summaries one must first break down the key concepts and ideas presented in the publication. To do so, it can be helpful to make a rough outline of the publication that can then be written into short summaries. This process is discussed in more depth in our best practice recommendation. Here we discuss the use of plain language summaries not only as a disability access issue, but also as an open-access issue.

During this process it is important to continuously question if the concepts can be explained further and whether the language is truly accessible. Sometimes making a publication more accessible simply requires using synonyms for complex language, while other times concepts need to be explained in more depth. It’s important not to assume an abstract concept does not need to be explained because it is familiar or common. Similarly, it’s also important not to exclude an abstract concept because of an assumption that people with I/DD may have difficulty understanding it. Often this means it just needs to be presented in more accessible terms.  You can find examples of our plain language summaries on the CEED website.

About the CEED Project

The idea for making plain language summaries for published articles for The CEED Project came about when Kate began presenting at conferences on disability employment and entrepreneurship, citizenship, dyadic interviewing and inclusive research methodology. She would often talk with self-advocates with I/DD and their families who were interested in learning more about the topic, and they would always ask for more information on this research. In particular, they wanted something that they could take with them and use. However, it felt insufficient to hand them an academic article that had been written for a completely different audience. Moreover, since it was written for academic publication the jargon level was extremely high! She realized just how often the very people who were supposed to benefit from the research had inadvertently been excluded from understanding the results because of how it was written and the language used. There had to be some way to make these articles more accessible for people with disabilities and their families. Since then, the underlying idea has been to provide summaries in plain language for these articles, which indicate what the full-text contains. That way, if someone wants or needs more in-depth information they have the option of referring to the relevant area of the article or they can contact us.

Carli became involved in this effort because one of her main research interests is the empowerment of people with intellectual and developmental disabilities. She finds knowledge translation of particular importance to make sure people with I/DD have equal access, and believes knowledge translation is crucial to ensure research expands beyond the walls of academia. Carli started making accessible plain language factsheets for the Sexuality and Disability Consortium so that a wide variety of people could access hard to find research about sexuality and people with I/DD. In doing this, she finds it important to consult with self-advocacy specialist, Tia Nelis, as a form of member-checking to ensure documents are appropriately accessible. Since then she’s completed a number of different knowledge translation activities for a variety of projects including the Institute on Disability and Human Development (the Illinois UCEDD), Illinois LEND, the Sexuality and Disability Consortium, and The CEED Project