A Seat Around the Table: Participatory Data Analysis With People Living With Dementia

Area of Science:

• Social Sciences
• Qualitative Research Methods
• Dementia Care Research

Background:

• Patient and public involvement in research has grown significantly.
• Limited research involves people with lived experience, particularly those with dementia, as co-analysts in data analysis and synthesis.

Purpose of the Study:

• To explore innovative methods for involving people with dementia as co-analysts in qualitative data analysis.
• To examine the role of theoretical frameworks, reflexivity, multiple voicing, literary styling, and performance in participatory data analysis.

Main Methods:

• Qualitative secondary data analysis using two theoretical lenses: Douglas's cultural theory of risk and Tronto's Ethic of Care.
• Collaborative workshops with people living with dementia to co-analyze data.
• Iterative cycles of presenting, interpreting, representing, and reinterpreting data and findings among diverse stakeholders.

Main Results:

• Identified practical approaches for engaging people with dementia as co-analysts.
• Demonstrated the value of theoretical frameworks and diverse analytical perspectives.
• Highlighted the importance of reflexivity, multiple voicing, literary styling, and performance in co-analysis.

Conclusions:

• Participatory data analysis with people living with dementia is feasible and valuable.
• This approach enriches research by incorporating lived experience into interpretation and synthesis.
• Further exploration of these methods can advance inclusive and ethical research practices in dementia studies.