Inclusive research and surveys
A new article on 27 November 2023 from the Centre for Universal Design Australia (CUDA) discusses the importance of including people with intellectual disabilities in research. Read it here. Many studies use research methods that are not designed to enable people with disabilities, and specifically people with intellectual disability and other marginalised groups to participate. This means people in these groups do not get a say. Researchers are not hearing what they need.
The article focuses on the context of health, employment, education and independent living research. Even if you are not doing research of this kind, there are likely times at your workplace or organisation when you need to ask people what they think. You may be looking for feedback, complaints or ideas. You may be embarking on a co-design process to include input from members of a certain community in your program or initiative.
Think about how you are asking. Are you including people with low literacy? It may be a person with intellectual disabilities, or any disability that impacts your ability to read, concentrate on and interpret written information. It is also people who are time-poor, stressed, or speak English as a second language. Are you expecting people to read and fill out complex forms? Or get through multiple layers of web navigation to find your online survey?
Even within the intellectual disability cohort, we often see only people with high levels of autonomy, literacy skills and good spoken communication skills being included in research. This is not good enough.
Think about who you are asking. Is it only people who sit on advisory boards and are used to giving their opinion? These people may have had opportunities to develop skills and knowledge their peers have not. They have great insight to offer, but don’t forget about people who have not had the same opportunities and are typically excluded. It may be people with communication differences (like people who do not use speech), people living in remote areas, or people who are socially or economically disadvantaged.
CUDA has shared a paper from the American Center on Knowledge Translation for Disability and Rehabilitation Research (KTDRR). It is about inclusive research methods for engaging people with intellectual and developmental disabilities. Read it here.
One study found some common problems with surveys. These problems make surveys hard for some people with disabilities to use. The problems were:
· the use of difficult vocabulary
· imprecise response options
· ableist language or concepts.
In our experience working with consumers who need Easy English, we have found that surveys and questionnaires often contain barriers you may not expect. For example, many people find it confusing to be asked to read a statement and rate their agreement on a scale of 1 to 5 or 10. Remember that rating scales are a mathematical concept, and interpreting and using them demands a fair amount of number literacy and assumed knowledge. Like assuming that 1 is a low score and that 5 is a high score, or knowing the nuance between “strongly agreeing” and just “agreeing.”
Consumers have also told us they prefer to be asked a direct question. When they were provided with a statement to rate, many did not interpret this as a question and were not sure what they were being asked.
The authors of the paper from KTDRR have some advice for including people with disabilities in research. The first key solution is to “adapt research materials and processes into individualised and accessible formats.” This means making sure everyone can read and understand your information. For surveys, they suggest to:
· add prefaces to increase precision or explain context
· simplify the sentence structure of your questions
· replace difficult vocabulary words, confusing terms, or figures of speech with more straightforward terms (drop the jargon)
· add images to increase clarity of response options.
A fifth suggestion was to add web links that define difficult terms or offer examples for clarification. We do not recommend using web links to do this, as this is a barrier for people with low literacy and low digital literacy. We do not use so-called ‘hard words.’ We explain its concept or find a more every day and shorter word (but maybe a longer phrase) to help the reader. We also include examples within the question itself.
Expecting every person to be able to access websites or have digital access is another barrier. Currently 25% of Australian adults are digitally excluded. There is another large group who only have mobile phone access, many who will only have a pre-paid pay-as-you-go card, rather than a subscription. Have you tried completing surveys that require text on your phone?
Talk to us about developing your surveys and research materials to Easy English. Universal design principles promote thinking about making your project accessible to all people from the start. All people will benefit from this. You will find you
· get more responses — not just from people with low literacy; all people will find it easier to contribute
· get quality responses — clear information supports people to share their ideas.
When your research is finished, think about publishing the results in Easy English too. Your participants will want to read the findings, and see their ideas in print. This indicates respect for their input, and goes a long way toward building trust. The next time you are looking for responses, people will want to contribute again or recommend their friends.
We have Easy English examples on our website of various types of surveys, consultation guides and research reports. Some projects we have worked on are:
· Public transport for people with disabilities (Australian Department of Infrastructure, Transport, Regional Development and Communication)
· Impact of COVID-19 on school students with disability (Australian Department of Education)
· About where you live. Tell us what you think. (Murrindindi Shire Council)
· Food insecurity inquiry (WA Legislative Assembly)
· Tell us what you think. It is about the NSW Trustee and Guardian. (Audit Office of NSW)
· You were online. People hurt you. Our report. (Australian eSafety Commissioner).
Look out for some new surveys in Easy English in the new year.
Sierra Morabito
Specialist content writer
Access Easy English
Office phone: 0466 579 855
Email: sierra@accesseasyenglish.com.au
Website: https://accesseasyenglish.com.au/
Facebook: https://www.facebook.com/accesseasyenglish
LinkedIn: Cathy Basterfield and Access Easy English
Twitter: @accesseasyengli
