This study set out to understand whether recent approaches to informing people with learning disabilities about the findings of research ((e.g. simplified information sheets, reading out information etc) are effective and to discover what people with learning disabilities understand about research.
The researchers invited seven men and ten staff members to work as co-researchers with two academic researchers over 20 months using a facilitated collaborative action research approach. This involved participants becoming researchers in their own right, collaborative discussions, and a variety ways of engaging with, presenting and collecting information
The team found that the men required training around research, consent and ethics. They took a number of benefits from their involvement including intellectual stimulation; staff attention;; increased self-esteem and confidence and skills development. Key elements to the success of the process were seen as the fun, longitudinal, recursive and collaborative approach.
The team have developed a framework ‘Understanding Research, Consent and Ethics: A Participatory Research Methodology in a Medium Secure Unit for Men with a Learning Disability’ to support others wishing to help people with disabilities engage in research.
Ten top tips for effectively involving people with a learning disability in research, Inglis P & Cook T, in Journal of Learning Disabilities and Offending Behaviour, 2, 2.