Knowing what you are in for: working together so we understand research

1. Dr Tina Cook: Reader Northumbria University tina.cook@northumbria.ac.uk Knowing what you are in for: working together so we understand research

2. Supporting Participation • 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

3. Aims of Research included • 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.

4. Why this research project? • Know very little about current understandings of research by people with learning disability • There are known issues around informed consent

5. What did we want to learn? • 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

6. The men • 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

7. Immediate difficulties • 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!

8. Next issue: • 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

9. Through the workshops we • 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.

10. Practical outputs • 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

11. Developing a new research Bid • 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

12. Identifying Issues for bid • 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!

13. Participation • Development of a bid • Collecting Data • Learning within research • Learning from research