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Using narrative to convey the experience of dementia care-giving: I Know How This Ends: Stories of Dementia Care

I KNow How This Ends: Stories of Dementia Care (2020) - cover

Parables of Care is an international collaborative project that explores the potential of co-designed comics to enhance the impact of dementia care research led by Dr Ernesto Priego, Centre for Human-Computer Interaction Design, City, University of London.

Today the project has announced a new title in their research comic book series: I Know How This Ends: Stories of Dementia Care (2020). This is the second volume in a series that started with Parables of Care: Creative Responses to Dementia Care (2017).

Drawn by Peter Wilkins and Melissa Martins, edited by Ernesto Priego and designed by Simon Grennan, I Know How This Ends is a 16-page comic book resulting from collaborative narrative research and co-design sessions with participants.

The book presents, in synthesised form, stories crafted from narrative data collected via interviews with professional caregivers, educators, and staff at Douglas College in Vancouver, Canada, who have cared for relatives and people with dementia in hospital.

The previous volume employed the form of the parable to tell individual stories based in real-life cases as told by carers. As the foreword explains, this new comic is structured like a classical Greek tragedy – with a prologue, three episodes, and an epilogue –because the stories the team worked with had the elements of tragedy: inevitability, stratagems to avoid fate that merely bring it on, and catharsis of negative emotions.

The intention of the book is to show the importance of feeling in care-giving, the professional aspects of which are sometimes at odds with the family systems aspect of dementia.

As we state in the foreword, by 2030, 82 million people are anticipated to have dementia and 152 million by 2050. With this project we aim to continue making a contribution to widen the dissemination of one of the key challenges of our time, following user-centred design and narrative research design methods.

I Know How This Ends: Stories of Dementia Care can be downloaded as a PDF file, under a Creative Commons Attribution-NonCommercial 4.0 International License, from

As this is a publication made for print please note the PDF file is 130MB; mobile users might prefer to download it and view it from a laptop or desktop.

The free print version of the comic will be available soon and you can request free copies via this form.

We look forward to hearing what you think.

This post was originally published at the Parables of Care project blog: https://blogs.city.ac.uk/parablesofcare/2020/02/12/i-know-how-this-ends-stories-of-dementia-care/

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City Interaction Lab Podcast – Episode 3 – User-Centred Usability Lab Design – A discussion with Adam Banks and Konstantin Samoyov from UX Study

Lab in a box! Via http://ux-study.com/

Lab in a box! Via http://ux-study.com/

At the HCID Comics, Games & Media Research Group we are interested in the multifaceted possibilities of storytelling. As part of our exploration of how narrative intervenes today in our everyday lives, we engage in different modes of research and practice dissemination that involve storytelling, such as podcasting. This is one of the reasons why we are are very pleased to announce today a new episode in the City Interaction Lab Podcast series.

In the third episode of the City Interaction Lab Podcast Stuart Scott chats with Adam Banks and Konstantin Samoyov from UX-Study.com.

The pair shed light on their user-centred approach to usability lab design, epitomised by their ‘Lab in a Box’ platform that provides a consistent and reliable lab experience for researchers across organisations.

The conversation includes the pair’s origins at Google, things to consider when setting up a usability lab and an introduction to the field of Research Operations. If you have previously set-up a usability lab or about to embark on the process of doing so then this is the episode for you.

If you like what you listen please share it with others and/or share your comments with us below!

City Interaction Lab Podcast is a series of thought provoking design focused interviews and opinions brought to you by City Interaction Lab and the Centre for Human-Computer Interaction Design at City, University of London.

Opening track: The Learning Experience, courtesy of Martin Eve. © Martin Eve.

The City Interaction Lab Podcast series is directed and produced by Stuart Scott and Ernesto Priego.

You can follow and provide feedback to the City Interaction Lab on Twitter @cinteractionlab.

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Radio France Documentary Podcast Series: “Video Games: that’s life!”

If you know French, you might enjoy this Radio France documentary podcast series on videogames.

Each episode comes with a post including additional information and useful references.

Episode two interrogates if video games are “the 10th art” (comics being the 9th!).

“What stories do video games tell and with what means? Are video games ready to talk about everything, from the most trivial to the most serious?”

If language is a barrier, each post contains links to videos you are likely to find interesting, for example,

The version in English is also on YouTube:

 

 

 

 

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Stories of Designs Past: Narrative Design Transmedia Archaeology

[Provisional draft notes shared as a prompt for future research group discussion]

My interest in the sociology of texts, transmedia storytelling and the role of materiality in the reading/collecting/reception/user experience, particularly in the case of comic book cultures, originally found a welcoming conceptual framework within the digital humanities. Recently, my interest has been evolving towards exploring the role of media archaeology within human-computer interaction design.

Media archaeology, as discussed by Jussi Parikka (2011), is a branch of media history that studies contemporary media culture by looking into past (also called “residual”) media technologies and practices. Media archaeology takes a special interest in practices, devices and inventions that may be now otherwise forgotten. It addresses the rapid obsolescence of software and hardware, and poses that their collection, preservation, conservation and study can provide important context for multidisciplinary analysis and innovation.

In particular, I have been recently drafting arguments and potential methodological and domain approaches to critical narrative design and speculative design (sometimes also called “design fiction”, though both terms are not always used to mean the same thing). Needless to say, all these terms have specific meanings and require further clarification and discussion, even for the initiated, let alone those new to them. For an intro into the relationships between the terms “critical design” and “speculative design”, I recommend  Anthony Dunne and Fiona Raby’s books, Design Noir: The Secret Life of Electronic Objects (2001) and Speculative Everything: Design, Fiction, and Social Dreaming (2013).

According to Henry Jenkins (2007), “transmedia storytelling represents a process where integral elements of a fiction get dispersed systematically across multiple delivery channels for the purpose of creating a unified and coordinated entertainment experience. Ideally, each medium makes it own unique contribution to the unfolding of the story.” Transmedia is a mainstream term within contemporary literary and cultural studies, but its application and study goes beyond the mainstream humanities.  Interaction designers are well aware that humans “are increasingly living their lives […] in multisensory, narrative driven ways” (Spaulding and Faste 2013).

I took the photos above of two items in my record collection. They are two 7″ vinyl records containing the audio recordings of two stories based on characters, situations and fictional worlds at the time (late 1970s) mostly developed through comic books (today it would probably be film, rather than comics). I played them the other day and I was once again amazed at how immersive and engaging (in spite of some unavoidable and fully expected silliness that hasn’t aged well). As storytelling, both recordings qualify as fully immersive devices that expand fictional universes beyond their original media and that stimulate the imagination via different senses in a media-specific way. (For more context on these records and the label that released them, see Ettelson 2015).

This brief note is meant to share my interest in continuing exploring how media archaeology approaches to examples like these audio comic books in 7″ vinyl,  can help us understand better how “residual media” could offer valuable context into the affordances of transmedia in both a pre-digital and in a fully networked, digital, cloud-based eras.  This implies that “transmedia” is (of course) not only a 21st century phenomenon.

Within the field of HCI it is now well known that storytelling is a critical design tool in human-computer interaction, in particular by addressing how an exploration of potential futures can inform strategies around the problems of the present (see for example Dow et al 2006). How do form and content, materiality and information, inter-relate to participate in the user experience?  Storytelling can also be a powerful strategy to understand the designs of the past, and to understand how these designs always-already include future designs- what can we learn from the design of things past, what stories do these objects tell, and what kind of insights can we obtain from them to design the present and the future?

Hoping these brief notes help as a starting point for further discussions between members of this research group.