Understanding the Infusion of Stakeholders Values in Technology Design

HCI researchers are increasingly attending to the ways that the values of various stakeholders make their way into the design and evaluation of technology. Identifying the often conflicting values of stakeholders helps us to reflect on and address the values we prioritize in the technologies we design. This is especially important in dementia, as other stakeholders, who may have contrasting values, are often given the power to make choices and exert agency over these individual’s health and technology use.  One major stakeholder in the dementia context are the practitioners who care for people living with dementia. I interviewed nineteen practitioners, finding they had contrasting epistemological views of dementia which affected how they interacted with their clients and facilitated technology use. Further, when researchers in HCI work with practitioners to design future technologies for people with dementia these views may be embedded in technologies designed with their assistance. In this paper we encourage technology designers to identify their own perspectives towards people with dementia concerning concepts such as infantilization, respect and self-actualization. In doing so, we advocate for perspectives that prioritize dignity and respect, while recognizing and caring for the needs of practitioners trying to operate within the existing system [Dixon, 2020].

Another major stake-holder to consider are the technology designers themselves. With minimal public health education concerning dementia, designers are left to their own often inaccurate understanding of dementia, leading to technologies designed for use by people with dementia which are stigmatizing and dehumanizing. For this reason, in my past work we developed and iteratively tested a modified user-centered design process, which incorporated a human-rights based approach [Chopra, 2021]. Through two iterations of a three-day-long design workshop, including undergraduate students and people living with dementia, we used this modified user-centered design process to teach undergraduate students in computing how to design technologies with considerations for users’ basic human rights [Chopra, 2021]. These workshops provided technology designers and developers in HCI with practical ways to incorporate human rights into the design of technologies for all people, regardless of disability. 

In addition to studying the effects of the values of a single type of stakeholder (e.g., practitioners, technology designers) on technology design broadly, I have also investigated the effects of the values of various stakeholders on a single online platform, Dementia Diaries – a website which educates the public about dementia . Findings revealed tensions which arose concerning the needs of individuals with dementia to share their authentic “real and raw” experiences with the condition and the role of moderators, who were not living with dementia, to censure these posts to ensure that individuals with dementia do not say hurtful things or post things they will later regret [Lazar and Dixon, 2019]. To navigate these tensions moderators engaged closely with people with dementia both online and offline, to develop a sense of trust that they were looking out for the best interests of people with dementia. Based on these findings, we discuss ways to navigate tensions in stake-holder values in online platforms, such as by engaging with those disclosing sensitive health and disability information in sensitive ways to increase their sense of safety and comfort sharing on the platform. This work received an Honorable Mention Award at CSCW’19.

The purpose of this study is to observe how dementia technology is talked about in the context of dementia related conferences. The goal is to gain a further understanding of the perspectives of people with dementia and those working with them on the technologies available for the aging population. Additionally, this work is allowing us to map the state of the art of technology design for dementia.

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