Learning from ethics in dementia research

Digital Health

Collaborators University College Cork, Fontys University of Applied Sciences, University of Technology Sydney, University of Maryland, University of Waterloo, University of Limerick

Abstract

We look at how HCI researchers working in the area of dementia are modelling ethical stances to ensure researcher-participant relationships focus on meaningful engagement and care.

Method

We interviewed 22 HCI researchers with experience working in dementia care contexts.

Takeaways

Ethical Review Boards, in prioritising the protection of human subjects, can inadvertently bar the full inclusion of people living with dementia in socially-oriented research.

Engaging in participatory research in HCI raises numerous ethical complexities such as consent, researcher relationships, and participant compensation. Doing HCI work in the area of dementia amplifies these issues, and researchers in this area are modelling ethical stances to ensure researcher-participant relationships focus on meaningful engagement and care.

This paper presents an insight into the kinds of ethical foci required when doing design research with people living with dementia and their carers. We interviewed 22 HCI researchers with experience working in dementia care contexts.

Our qualitative analysis outlines subsequent lessons-learned, such as recognition of the participants, self-care, research impact, and subjectivity in ethical review boards. Furthermore, we found the complexity of navigating both “everyday” and more formal institutional ethics in dementia research has implications beyond the context of working with people with dementia and outline key considerations for ethical practices in socially orientated HCI research.

Takeaways

Ethical Review Boards, in prioritising the protection of human subjects, can inadvertently bar the full inclusion of people living with dementia in socially-oriented research. This being so, researchers in the field have gained a variety of insight into the ethical complexities when it comes to working in HCI.

Our analysis of interviews produced two overarching themes: guidelines vs situated practice, and emotion and everyday experiences.

We proceed from our findings to emphasise directions that are applicable in all HCI research that seeks to work with marginalised populations: designing for technological end of life, re-framing impact and aiming for research clarity.

Publications

Flexible, Everyday: Learning from Ethics in Dementia Research

  1. James Hodge
  2. Sarah Foley
  3. Rens Brankaert
  4. Gail Kenning
  5. Amanda Lazar
  6. Jennifer Boger
  7. Kellie Morrissey

2020CHI '20: Proceedings of the 2020 CHI Conference on Human Factors in Computing Systems