Relational, Flexible, Everyday: Learning from Ethics in Dementia Research

Area of Science:

• Human-Computer Interaction (HCI)
• Gerontology
• Bioethics

Background:

• Participatory research in Human-Computer Interaction (HCI) presents ethical challenges.
• These complexities are amplified when conducting research within dementia care contexts.
• Existing ethical frameworks require adaptation for sensitive research involving vulnerable populations.

Purpose of the Study:

• To explore the ethical considerations specific to design research with people living with dementia and their carers.
• To identify lessons learned by HCI researchers experienced in dementia care.
• To inform ethical practices in socially oriented HCI research.

Main Methods:

• Qualitative analysis of interviews with 22 HCI researchers.
• Focus on experiences within dementia care research contexts.
• Exploration of ethical foci, researcher-participant relationships, and practical challenges.

Main Results:

• Identified key ethical lessons: participant recognition, researcher self-care, research impact, and subjectivity in ethical review.
• Highlighted the complexity of navigating "everyday" and institutional ethics in dementia research.
• Found implications for broader socially oriented HCI research.

Conclusions:

• Ethical practices in dementia-focused HCI research require nuanced approaches.
• Considerations extend beyond formal ethics review to encompass ongoing researcher-participant engagement.
• Recommendations for ethical conduct in sensitive, community-based HCI research.