25/04/2020

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

James Hodge, Sarah Foley, Rens Brankaert, Gail Kenning, Amanda Lazar, Jennifer Boger, Kellie Morrissey

Keywords: dementia, ethics, emotion, care, lived experience, relational

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Abstract: 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.

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