barbara sharp, involving people with dementia in qualitative research, british society of...
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Involving people with dementia in qualitative research
Barbara Sharp
British Society of Gerontology 13 Sept 2013
12.15 – 13.15
Introduction
Barbara Sharp
• Alzheimer Scotland Practice Development Manager
• Alzheimer Scotland Research Fellow Alzheimer Scotland Centre for Policy and Practice
• PhD research student
Research study
• Subjective experience of stress in people with dementia
• Interpretative phenomenological analysis
• Purposive sample
• Focus groups – people with dementia and interviews with small number of spouses
Involving people with dementia in qualitative research
• Why involve people with dementia in research?
• Considerations, challenges and rewards
• Achieving meaningful participation of people with dementia in research
• The practitioner - researcher
Why involve people with dementia in research?
• People with dementia have the right, the will and may benefit
• Challenge our thinking and enhance our understanding of the lived experience of dementia
• Inform care practice and interventions
• Improve the quality and meaningful nature of research
The dementia journey
Considerations and challenges
• Access and accessibility
• Ethical approval and considerations
• Person centred approach - specific to person, decision, time and situation
• Consent – beyond capacity
• Time and process
• Risks – harm and benefit
Achieving meaningful participation
• What is being asked of me?
• What will the nature and consequences of my contribution be?
• Who will be involved?
• Can I change my mind?
• What will happen if I get upset?
• What will happen to what I say?
My name is Barbara Sharp and I am conducting research on how stress affects people with dementia
The practitioner - researcher
• Practitioner skills make meaningful engagement more likely
• ‘Insider’ knowledge – what matters
• Interpretation informed by experience
• Confidence, validity and trust
Contact details
Barbara Sharp
Alzheimer Scotland (Wed-Fri)
Alzheimer Scotland Centre for Policy and Practice (Mon-Tues)
Mob: 07584 673967