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The Empower project: empowering adults with learning disabilities to participate in research

Adults with a learning disability require clear and easy-to-read information to help them decide whether to take part in a research study. This project identified how adults with learning disabilities want information about health and social care research to be presented to them. 

Project summary

This project involved adults with learning disabilities, their carers and researchers working together to develop a set of resources that could help support their decision making about whether to take part in research or not.

Adults from several learning disability groups based in Nottinghamshire took part. The project included the following activity:

• Scoping review - a way of looking for information that already exists. We looked at grey and peer-reviewed literatures.
• Meetings and surveys: we carried out a survey and held stakeholder meetings with researchers, healthcare professionals and carers to find out how they help adults with learning disabilities to make decisions.
• Co-production activities, performed with adults with learning disabilities and their carers.
• Production of resources: we developed a set of resources, which the learning disability groups named 'Empower'.

Protocol

Read the protocol for the Empower research project

Authors: J O Agbonmwandolor^1,2, L Croot³, J Finlayson⁴, P Logan², M Golding-Day², K Robinson²

Affiliations

1. Research and Innovation, Nottingham University Hospitals NHS Trust
2. Centre for Rehabilitation Ageing Research, University of Nottingham
3. Division of Population Health, University of Sheffield
4. School of Health and Life Sciences, Glasgow Caledonian University

Acknowledgements

A special thanks to everyone that was involved in this project and whose ideas were used to produce the resources. This includes:

• Reach Group Southwell
• SPLAT Learning Disability Group, Aspley
• OneConversation, Mansfield, and their support staff
• NUH Acute Learning Disabilities Liaison Team
• various researchers and healthcare professionals

This project is funded by the National Institute for Health and Care Research (NIHR) School for Primary Care Research (SPCR). Project reference: NIHR SPCR-2021-2026.

The views expressed are those of the authors and not necessarily those of the NIHR or the Department of Health and Social Care.

Videos about the Empower project