People with intellectual disability have a right to have their voices heard and take part in the national conversation. They have a right to be asked for their views on their lifestyle and services, as well as issues that are personal or emotional to them. And they have the right to be able to answer questions about their lives without relying on others to do it for them.
A report in the Journal of Intellectual Disability Research looked at how well people with intellectual disability could answer a survey about loneliness. They were given questions that were written for the general community and questions that were written specifically for people with intellectual disability.
The authors of the report wanted to see if there were differences between how people with intellectual disabilities responded to the two surveys. The first survey, the UCLA Loneliness Scale, was written for the general community. The second survey, the Modified Worker Loneliness Questionnaire, was written for people with intellectual disability.
The study included 56 participants. Each participant was over 45 years of age and had a disability – 40 of them with intellectual disability and 16 with another type of disability.
The findings from the study were very clear. The second survey, which was written for people with intellectual disability, was easier for all participants to answer (there were a small number who weren’t able to clearly answer either survey). Three times as many people with intellectual disability responded to the second survey, compared to the first survey. The second survey was answered by 49 of the 56 participants (88 per cent), while only 21 (38 per cent) were able to answer the first survey.
How to simplify a survey
The report looked at the differences in how each of the surveys was written and the important aspects that made a survey easier for people with intellectual disability to understand it. They include:
- using shorter and simpler questions
- avoiding passive voice or questions that are negatively worded
- try to avoid questions that ask how often someone did or felt something
- avoid using metaphors in questions, such as ‘feeling in tune with others’
- try to avoid a five-point scale for an answer – such as: not at all, a little, moderately, mostly, totally – was not suitable for people with intellectual disability. Where possible, a three-point scale should be used instead.
The survey written specifically for people with intellectual disability, using simple wording and question styles, helped most of the participants to be able to respond. Using surveys like this results in a much higher number of responses, which also means a lot more data can be gathered. However, the report also suggests that comparing data from these surveys with results from surveys given to the general community can be difficult – particularly if the surveys are markedly different in a number of questions and the content of those questions. This means it is essential to ensure that the content from the survey given to the general public is correctly translated for the survey for people with intellectual disability.