New guidance to improve inclusion of adults with learning disabilities in research
29 September 2023
Sussex and Kent researchers have been working together to address the challenge of including adults with learning disabilities in their research studies.
In response to insights gathered from research staff and clinicians about their experiences of being inclusive, it was evident that comprehensive guidance was necessary to enhance the inclusion of individuals with learning disabilities.
Sussex Partnership worked alongside Kent and Medway NHS and Social Care Partnership Trust, Kent Community Health NHS Foundation Trust, University of Kent and Bemix. Together with insights from experts by experience, they produced three short films highlighting best practice. These valuable resources are now available to view and are accompanied by two sets of succinct guidance - one of which was created using Easy Read format.
The project, led by Dr Anna-Marie Bibby-Jones, Equality, Diversity & Inclusion in Research Lead for Sussex Partnership, will increase awareness of how to include people who have a learning disability or are neurodiverse. The project was funded by the National Institute of Health and Care Research Clinical Research Network Kent, Surrey & Sussex (NIHR CRN KSS) which will share these resources nationwide.
The project explored what people with learning disabilities think are the barriers that stop them accessing research and how to overcome them. They had seven key messages for researchers:
- Involve people with learning disabilities from the start and use methods such as co-production
- Use different mediums, resources, and support so we can participate in research
- Consider training needs so that we can fully contribute
- Be person-centred, everyone has individual needs
- Tasks will take longer so include extra time and use different formats in communications
- Work with stakeholders and our established networks
- Equally value our contribution in terms of voice and remuneration
The resources are:
- Developing Guidance to Address Barriers to Including Adults with LD in Mental Health Research
- Best Practice for Inclusivity of people with Learning Disabilities in Research
- Improving access to research for adults with a Learning Disability and Neurodiverse need
- Guidance for involving adults with learning disabilities in mental health research - an easy read version
- Guidance for improving involvement and participation in mental health research for adults with learning disabilities
These resources can be found in the Useful guidance for researchers' section of the Sussex Partnership website, under 'Equality, diversity and inclusion in research'