dr tina cook: reader northumbria university tina.cook@northumbria.ac.uk

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  • 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 researchthe ethics of research informed consenthow research findings can be usedpossibilities and limitations of research.

  • Know very little about current understandings of research by people with learning disabilityThere are known issues around informed consent

  • What men with learning disability might know about researchWhat 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 spaceAll have learning difficulties93% have a criminal record13% diagnosed schizophrenia/paranoid13% depression/post traumatic stress disorder60% 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 thinkSix two hour workshops plannedCalled on Lawnmowers - DVD

  • Developed their understandingsDeveloped researchers understandingsCollected DataIdentified 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 disabilityMain 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

  • LiteratureIndication 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

    Minimal consent to keep safe more than acceptable to LREC*

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