Proceedings of the 2020 CHI Conference on Human Factors in Computing Systems 2020
DOI: 10.1145/3313831.3376627
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Relational, Flexible, Everyday: Learning from Ethics in Dementia Research

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 i… Show more

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Cited by 24 publications
(20 citation statements)
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“…As suggested by [17], we monitored consent during each session with the residents: we checked in verbally if they wanted to play activities and whether they wanted to swap games. It was important to us to ensure that participants were comfortable during the activities and to lexibly respond to the engagement of participants [32], so there were days where we had to divert from the research activities to other activities or to recommend resting instead of continuing the session. he research project received ethics approval through Swinburne University's Human Research Ethics Commitee.…”
Section: Ethicsmentioning
confidence: 99%
“…As suggested by [17], we monitored consent during each session with the residents: we checked in verbally if they wanted to play activities and whether they wanted to swap games. It was important to us to ensure that participants were comfortable during the activities and to lexibly respond to the engagement of participants [32], so there were days where we had to divert from the research activities to other activities or to recommend resting instead of continuing the session. he research project received ethics approval through Swinburne University's Human Research Ethics Commitee.…”
Section: Ethicsmentioning
confidence: 99%
“…With the changes in balance that people with dementia experience [38], this opens up new opportunities for voice enabled smart speakers to facilitate everyday tasks such as turning on and off devices without having to stand up, which could put someone in jeopardy of falling and hurting themselves. However, this brings up debates over agency vs safety in dementia technology design [27,54,55,65,113], which are of critical importance for technology designers in this space to consider.…”
Section: Interacting With Technology Using the Sensesmentioning
confidence: 99%
“…Dataset authors should consider the context of compensation, in terms of what is most valued by annotators; money or gift cards may not be the most appropriate compensation for all contexts. For example, Hodge et al found that money was not useful to their participants who live in care homes [56]. Further, if the authors expect to make a profit from their dataset, they should consider what fair compensation would be to their subjects and authors given that profit necessitates their data and labor.…”
Section: Recommendations For Incorporating the Value Of Carementioning
confidence: 99%