Benefits of participative research in medium secure settings


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.

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John Northfield

After qualifying as a social worker, John worked in community learning disability teams before getting involved in a number of long-stay hospital closure programmes, working to develop individual plans for people moving into their own homes. He worked for BILD, helping to develop the Quality Network and was editorial lead for the NHS electronic library learning disabilities specialist collection. This led him to found the Learning Disabilities Elf site with Andre Tomlin as a way of making the evidence accessible to practitioners in health and social care. Most recently he has worked as part of Mencap's national quality team and also been involved in a number of national website developments, including the General Medical Council's learning disabilities site.

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