knowing what you are in for: working together so we understand research
DESCRIPTION
Dr Tina Cook: Reader Northumbria University [email protected]. Knowing what you are in for: working together so we understand research. Supporting Participation. - PowerPoint PPT PresentationTRANSCRIPT
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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
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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.
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Know very little about current understandings of research by people with learning disability
There are known issues around informed consent
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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
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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
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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!
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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
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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.
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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
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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
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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!
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Development of a bidCollecting DataLearning within researchLearning from research