Promoting participation of people with intellectual and developmental disabilities in social care research: Developing an easy read version of ASCOT research
James Caiels | University of Kent
Objective: The Adult Social Care Outcomes Toolkit (ASCOT) is a standardised tool to collect data on social care-related quality of life. This paper reports the experiences of developing and cognitively testing an Easy Read version of ASCOT for self-report by people with intellectual disabilities.
Data and methods: The work combined survey development and pre-testing methods with approaches to creating accessible information for people with intellectual disabilities. A working group assisted researchers in identifying appropriate question formats, pictures and wording. Eight focus groups with 32 participants and 22 cognitive interviews were conducted to test various iterations of the instrument.
Results: As a result of feedback from the working group and findings from the cognitive interviews, a number of changes were made to the questionnaire, these included changes to illustrations, the wording of question stems and response options.
Conclusions: The process has demonstrated the benefits of including people with intellectual disabilities in the design and testing of data collection instruments. The research contributes to the aim of improving the engagement of groups that are under-represented in the evidence about social care.