Barbara Sharp, Involving people with dementia in qualitative research, British Society of...

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)

bsharp@alzscot.org

Alzheimer Scotland Centre for Policy and Practice (Mon-Tues)

Barbara.Sharp@uws.ac.uk

Mob: 07584 673967