Dr Tina Cook: ReaderNorthumbria University

tina.cook@northumbria.ac.uk

Understanding research, consent and ethics: a participatory research methodology in a medium secure unit for men with a learning disability.

Funded through the NHS National Forensic Mental Health R&D Programme

To identify key processes that enable people with complex learning needs to understand: the nature of research the ethics of research –

informed consent how research findings can be

used possibilities and limitations of

research.

Know very little about current understandings of research by people with learning disability

There are known issues around informed consent

What men with learning disability might know about research

What they need to know more aboutWhat enables them to

know/understand more about itHow they can participate in

supporting the learning of others

Active participants in their living space All have learning difficulties 93% have a criminal record 13% diagnosed schizophrenia/paranoid 13% depression/post traumatic stress

disorder 60% have a history of alcohol/substance

abuse

How to get consent for the project without informing the men all about that we wanted to research – ie what they already knew about research and how they might learn more!

Getting across the idea of what research and informed consent might be without telling them what we wanted them to think…

Six two hour workshops plannedCalled on Lawnmowers - DVD

Developed their understandings Developed researchers’ understandings Collected Data Identified key issues from data (data

analysis) Developed facilitated learning package for

other people with learning disabilities.

information for people with learning difficulties on ‘research, consent and ethics’

information for those who research with people with learning difficulties on ‘principles for gaining informed consent’.

Informed RECs - presentation at their conferences (local and

national) Article in Research Ethics Review 2009 Vol5

(2) pp43-88

Improving access to health: factors affecting uptake of annual health checks (AHCs) for people with learning disability

Main aim was to find out what people with learning disability and their carers/family members know about AHCs, why some attend & some do not and what might encourage attendance

Literature Indication from those who use

services – ask themBut how do we explain about AHCs

without telling them what to think?Lawnmowers to the rescue!

Development of a bidCollecting DataLearning within researchLearning from research