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Conversation Analysis The ethics and data collection of naturally occurring conversations in dementia

Doing Dementia CA is the primary method of analysis Family conversations Data collection Ethics Safeguarding the participants

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Page 1: Doing Dementia  CA is the primary method of analysis  Family conversations  Data collection  Ethics  Safeguarding the participants

Conversation Analysis

The ethics and data collection of naturally occurring conversations in dementia

Page 2: Doing Dementia  CA is the primary method of analysis  Family conversations  Data collection  Ethics  Safeguarding the participants

Doing Dementia CA is the primary method of analysis

Family conversations

Data collection

Ethics

Safeguarding the participants

Page 3: Doing Dementia  CA is the primary method of analysis  Family conversations  Data collection  Ethics  Safeguarding the participants

Why study conversation?

CA is a research tool which can be applied to all talk-in-interaction Courtroom Business meetings Interviews Emergency calls

Investigation of the interactional strategies employed by people with dementia and their co-participants

The lived experience of dementia happens at home, everyday, in the small mundane decisions we make

Page 4: Doing Dementia  CA is the primary method of analysis  Family conversations  Data collection  Ethics  Safeguarding the participants

Data collection Informed consent

Privacy

Practical challenges – who will operate the recording device?

Recruiting participants

Page 5: Doing Dementia  CA is the primary method of analysis  Family conversations  Data collection  Ethics  Safeguarding the participants

Ethics: informed consentcapacity to decideconfidentiality freedom from coercion

Participants: early stage dementiaacknowledging their diagnosismembers of the Alzheimer’s Society

Support by the Alzheimer’s Society

Project Design

Page 6: Doing Dementia  CA is the primary method of analysis  Family conversations  Data collection  Ethics  Safeguarding the participants

Ethics Proposal Supporting letter from the Alzheimer’s Society

Information for Alzheimer’s Society staff

Information for potential participants Accessible format ‘Easy Read’ (DH, 2010) Given time to read, understand and ask questions Contact information provided

Demographic questionnaire

Consent form

Page 7: Doing Dementia  CA is the primary method of analysis  Family conversations  Data collection  Ethics  Safeguarding the participants

Informed Consent Capacity to decide

Can the participant understand the research, and their part in it, well enough and for long enough, to make an informed decision?

Mental Capacity Act (2008)

Nuffield Council on Bioethics (2009)

Page 8: Doing Dementia  CA is the primary method of analysis  Family conversations  Data collection  Ethics  Safeguarding the participants

Project design A multiple case study.

A snap-shot of the conversational abilities of people with dementia and their caregivers.

Video data of around three hours from up to 12 dyads

To explore the communication strategies of PWD and their everyday conversational partners.

Page 9: Doing Dementia  CA is the primary method of analysis  Family conversations  Data collection  Ethics  Safeguarding the participants

Recruiting participants

Members of the Alzheimer’s Society valued this kind of research. Both people with dementia and caregivers felt it was an important area for research. Communication was one of the major issues that affected daily living in the early to mid stages of dementia.

Page 10: Doing Dementia  CA is the primary method of analysis  Family conversations  Data collection  Ethics  Safeguarding the participants

FeedbackMembers told me…

They had too much on

Medical complications

Already involved in other research

Operating a video recorder would be problematic

They were ‘private’ people

Page 11: Doing Dementia  CA is the primary method of analysis  Family conversations  Data collection  Ethics  Safeguarding the participants

Project design (2)A detailed single case study

Mixed methods approach

Primarily CA

Semi-structured interviews

Observations from wider involvement with PWD

Audio recorded conversation

Page 12: Doing Dementia  CA is the primary method of analysis  Family conversations  Data collection  Ethics  Safeguarding the participants

Participant consent

Contact with Alz

staff

Discussion with

researcher at Alz group

Meeting at participant

s’ home

Caregiver offers

additional support

Page 13: Doing Dementia  CA is the primary method of analysis  Family conversations  Data collection  Ethics  Safeguarding the participants

A complex case study

Person with

dementia

Primary caregiver

Other family

members

community

Page 14: Doing Dementia  CA is the primary method of analysis  Family conversations  Data collection  Ethics  Safeguarding the participants

Thank you

I am grateful for the support of the local branch of the Alzheimer’s Society and of course to the generous families who have taken part in this project.