Negotiation, Values and Participation

This series of posts are written to help me narrow down my area of interest and shape my research question. I feel like I am very close to it at the moment and therefore try to explore it from many different areas to find the question that lines up my interests with the gaps in the literature.

There are three areas that I keep coming back to, but I cannot yet fathom how -even if- they are related. Not surprisingly if you read the heading the three areas are: Negotiation/Communication, Values and Participation/Appropriation. In this article I want to describe the three areas, outline the problem, pose a possible research question and outline possible methods to address the question. I hope that the process of writing will help me to understand whether the three areas are related or to understand which one is the one I want to tackle or find reasons why any would be more relevant.

Negotiation / Communication: This area is a development from my MA project, for which I made a design prototype that would use affective computing to provide a drawing and writing tool people could use shortly after they have been diagnosed with dementia. It has been designed to be used individually or shared by a couple. While I started off designing something that communicated the emotion of someone living with dementia directly, I found it more interesting after the initial literature review to design a reflective journal that would allow the user to take control of the process. But the main idea was to address the impact of the diagnosis which is at the moment rarely supported.
Within my current project I found that many of the current sensor-based technologies proposed to support dementia care pose complex questions regarding autonomy vs. privacy. My literature review and the initial study I did made it clear that people value these items very differently, but that technology currently is very limited in supporting individual use. Not only does it not offer ways if individualisation, it is also very ‘blackboxed’, giving little incentive to discuss the issues. It is an area in which I feel that interaction design can make a big difference. The problem I see is that while it has been suggested that monitoring of this kind must rely on informed consent and in the awareness of what is happening, the technology currently available hinders this process. The question resulting from this is: How can technology support communication about autonomy and privacy in the context of dementia care? Methods I would like to use this question are based in design prototypes and design futuring to develop alternative scenarios to the technologies in use today. These could be exhibited to a wider audience and could be used in sessions both with people with dementia and others without to evaluate their use and open up a discussion about the current technologies.

Values: This area of interest has been opened up to me by my own emotional response to many of the technologies developed. Through my literature review I have since then learned how useful it would be for these technologies to adapt to the users values. With an increase in networked and ubiquituous devices research in this area has wider implications as well. This question is possibly the one that touches the most on issues of survaillence and the way technology supports diversity in our society. The problem I see is twofold: In dementia care possibly useful devices are not used as users feel that they do not work for them. The wider problem I see is that technology can be prescriptive if we do not find ways to individualise them in a way not too overwhelming for the user. The question resulting from this is: What values are communicated through technology in dementia care today? How can design support more value-sensitive design that enables the user to chose? To address this question, I would use the following methods: Design future writing could be a starting point of exploration of current values by projecting developments both into positive and negative directions.

Participation / Appropriation: The project was originally called “Dementia Hacks” and this is the area that is closest to the originally proposed idea. It stems from the assumption that everyone has agency. Dementia care is one area which assumes lack of agency at the moment and therefore might take control away from the user. Even though calls have been made for technology that supports rather than overwrites user actions have been made, what is currently available does not follow these guidelines. A feeling that the current technology is normative stands in the way of its adoptions. Theories about technology appropriation become relevant in this context. If the development of Smart Homes and Smart Environment is just around the corner as suggested by some, research done as a case study in regards to adaptability of technology in dementia care can become relevant in this larger context as well. The problem is that current technologies are not adaptable, considering a static user. That way they are considered stigmatising which leads to reduction, which reduces user participation even more. The question resulting from this is: How can ew design technology in a way that enables participation and appropriation by people living with dementia? Methods used to to explore the question could focus on autoethnographic methods to understand the restrictions of current technologies, workshops with users with and without dementia to understand what level of participation would be acceptable and what matters to them as well as design prototypes to explore these issues further.

 Yes, this has been a helpful exercise in showing me that values is a topic that runs through everything I am interested in, while the other two are more interesting in their own right. Even though the two areas of communication and particiaption are similiar in some of the underlying assumptions, they are different. But I feel at this point both are relevant in their own right and it will be up to me to decide where I want to focus on. As a next step I am going to write a summary proposal of each to discuss with my supervisor.


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