Co-producing resources to support participation in research for adults with intellectual disabilities

Background: Adults with intellectual disabilities are often excluded from clinical research due to assumptions they lack capacity to consent and engage in complex research processes. This means that the voices and experiences of adult with intellectual disabilities are often not heard within research and the research findings don’t reflect their needs. Approaches to support adults with intellectual disabilities to participate in research are needed. We are currently developing a falls prevention tool for adults with intellectual disabilities which is funded by the National Institute for Research. As part of this work we have been working with a group of adults with intellectual disabilities who have said that taking part in research can be challenging and they welcome feeling included and listened to. For the next stage of our research we want to evaluate the falls prevention tool to see if it can support adults with intellectual disabilities to reduce their risk of falls. To ensure that our future research is inclusive and supports the meaningful participation we want to work with adults with intellectual disabilities to co-produce a set of resources to support their participation.

Aim: Co-production of a set of resources to support adults with intellectual disabilities to participate in research

Project Activities: There will be two components of this project. Firstly, a scoping review on challenges and approaches used to support participation in research for adults with intellectual disabilities will be completed. This will help us to learn about approaches that have been used previously and how successful these have been. The second component will then involve working in collaboration with a group of adults with intellectual disabilities to discuss these approaches and their ideas on other approaches. The group will then decide on the approach they considered to be most important and what resources would be needed to support this. For example this may include videos and easy read booklets. A draft set of resources will then be developed and reviewed by adults with intellectual disabilities to produce the final set of resources.

Impact: This project will help to co-produce resources to support adults with intellectual disabilities which will be used in a future research study. This will ensure that they are meaningfully included in the evaluation of the falls prevention tool. The work will also help other researchers to consider how to design and conduct their research to support participation.

Amount Awarded: £39,777