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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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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.

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HCID Seminar: Narrative Prototyping: Using Stories to Make Better UX Strategy

 Victoria Kirk Owal Protagonist Studio

Victoria Kirk Owal. Protagonist Studio

Talk Title: Narrative Prototyping: Using Stories to Make Better UX Strategy

Victoria Kirk Owal @kirkitude

Protagonist Studio

Time: 13:00, Friday 24 January 2020
Room: A214

https://hcid.city/seminar/

You’re designing a new service, product, app, website, etc., and you want all the parts to work together. You want it to make sense; to be seamless. You want it to be *meaningful*. But where do coherence and meaning come from? In our experience, it’s narrative: the most meaningful experiences have the strongest stories, and a clear narrative arc makes for good strategy. This talk discusses the psychology of storytelling and why humans tend to think in narrative. More importantly, it presents a concrete approach for turning written and visual narrative into a robust UX planning and prototyping tool, that enables rapid conceptual iteration early in a project (rather than burning hours on premature Agile sprints). Drawing on numerous real-world examples, this talk demonstrates Narrative Prototyping can inform user journeys, scenarios and service maps, and get design teams and key stakeholders communicating and working in the same direction.

 

Bio: Victoria helps businesses succeed by mitigating the risks of innovation. She synthesizes business strategy, and insights from culture, data, customers, and stakeholders into future-state strategic narratives people can understand and act on. Then, she aligns the cross-functional teams that design and deliver results. In nearly two decades at some of the world’s most successful creative consultancies, she’s helped her clients in over 100 companies in 36 countries interrogate assumptions, uncover fresh insights, and serve new and underrepresented customers — both B2B and B2C — across healthcare, energy, consumer goods, banking, computing, software, fashion, beauty, travel and leisure. In 2018 Victoria co-founded Protagonist Studio, a boutique strategic design consultancy for UX leaders in London and Amsterdam because she and her business partner, Carl Alviani, have seen firsthand how useful narrative is at shaping experience strategy, and they have formalised the process of applying it.

Take a look at the whole City HCID research seminar series at https://hcid.city/seminar/