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Hear the Voice, Respect the Person. Gillian McColgan Department of Applied Social Science, University of Stirling. Hear the Voice, Respect the Person. Research involvement Access and consent Methodology Theoretical framework Guiding principles.
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Hear the Voice, Respect the Person Gillian McColgan Department of Applied Social Science, University of Stirling
Hear the Voice, Respect the Person • Research involvement • Access and consent • Methodology • Theoretical framework • Guiding principles
Should people with dementia be research informants? • Demographics • Lack of understanding of subjectivity of dementia • Focus on second hand accounts • Emphasis on medical aspects of dementia
Access and consent • Negotiate access • Ethical approval • Consent from relatives (condition of access)
Research participants should be: • Informed • Not coerced • Competent
Person does understand Person does not understand Person may or may not understand Who decides? How? Competency
Methodology • Conversational • Led by research participants • Passivity on part of researcher • Reminders of research for continual consent • Treat with dignity and respect
Theoretical perspective • Aim not to differentiate • Use theoretical perspective used with any groups • Switch from passive recipients of care on course of linear decline to active and competent participants
[Personhood] is a standing or status that is bestowed upon one human being, by others, in the context of relationship and social being. It implies recognition, respect and trust (Kitwood, 1997: 8) Guiding principles
British Sociological Association Statement of Ethical Practice www.britsoc.co.uk Guiding principles