Dr Tina Cook: Reader Northumbria University

 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 about  What enables them to know/understand more about it  How 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 planned  Called 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 them  But how do we explain about AHCs without telling them what to think?  Lawnmowers to the rescue!

 Development of a bid  Collecting Data  Learning within research  Learning from research