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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.

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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/

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City Interaction Lab to Host December 2019 London Unreal Engine Meet-Up

tl;dr

What: The London Unreal Engine Meet-Up

When: Thursday 19th December 2019, 7:00 to 9:00 PM

Where: Oliver Thompson Lecture Theatre, Tait Building, City, University of London [map]

How: [Free] tickets are available online here: https://www.meetup.com/London-Unreal-Engine-Meetup/events/266648443/

Unreal Engine logo

 

The Unreal Engine is a AAA game engine produced by Epic Games that is used in popular games including the global phenomenon Fortnight.

The London Unreal Engine Meet-Up is one of the largest in the world offering an opportunity for those industry veterans and enthusiasts to meet and mingle alongside informative talks.

As Interaction Lab Manager and founding member of the HCID Comics, Games & Media Research Group, I (Stuart Scott) stepped in and offered to host the next London Unreal Engine Meet-Up at City, University of London.

The event is taking place on Thursday 19th December 2019, 7:00 to 9:00 PM, Oliver Thompson Lecture Theatre, Tait Building, City, University of London [map]

[Free] tickets are available online here: https://www.meetup.com/London-Unreal-Engine-Meetup/events/266648443/

Details

Come and have some drinks on us and talk about Unreal Engine at CMD London Unreal Engine Meetup at our new venue!

This month, the talks are sponsored by Full Stack consultants CMD (@CharMikeDelta) and will take place at City, University of London, EC1V 0HB, near Angel Tube Station.

7.00pm-9.00pm Listen to some talks about game development.

9.00pm+ It’s networking time. Drinks are on us! (Or just plug in your laptop, take advantage of the wifi and get some gaming done 😉 ).

If you have anything you want to show off, be it a gameplay prototype, concept art, audio, animation or 3D model, feel free to present it. Just bring a laptop. (Or a USB drive/Dropbox account, if you are struggling. We’ll sort you out).

[Free] tickets are available online here: https://www.meetup.com/London-Unreal-Engine-Meetup/events/266648443/

 

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Launching the Interaction Lab Podcast!

From the dementia care comic "I Know How This Ends", art by Peter Wilkins.

From the dementia care comic “I Know How This Ends”, art by Peter Wilkins.

We are pleased to launch our City Interaction Lab Podcast!

Brought to you by City Interaction Lab and the Centre for Human-Computer Interaction Design at City, University of London, the City Interaction Lab Podcast will be a series of thought-provoking design-focused audio episodes featuring interviews and opinions hosted by Stuart and Ernesto.

In this inaugural episode of the City Interaction Lab podcast Stuart and Ernesto talk about graphic medicine with Dr Simon Grennan (University of Chester) and Peter Wilkins (Douglas College, Vancouver Canada).

Our guests discuss their work co-designing the comics ‘Parables of Care‘ and ‘I Know How This Ends’ centred on dementia care. These complementary issues shine the light on those living with dementia and their carers.

If you are interested in how comics can be incorporated into your design practice then this is one not to miss!

Apologies for the audio levels, we’ll do better next episode!

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

The original audio file of the podcast has also been deposited in City Figshare.

Citation:

Priego, Ernesto; Scott, Stuart; Wilkins, Peter; Grennan, Simon (2019): City Interaction Lab Podcast – Episode 1 – Discussing Graphic Medicine and Co-Designed Comics – Parables of Care. City, University of London. Media. https://doi.org/10.25383/city.11347799.v1

More on Parables of Care

 

Parables of Care explores the potential of comics to enhance the impact of dementia care research.

The 16-page publication presents in comics form true stories of creative responses to dementia care, as told by carers, adapted from a group of over 100 case studies available at http://carenshare.city.ac.uk.

Parables of Care can be downloaded as a PDF file, under a Creative Commons Attribution-NonCommercial 4.0 International License, from

If you work in a library, hospital, GP practice or care home- or care for someone with dementia in the UK, you can order a free copy of Parables of Care here: in the UK you can request printed copies at no cost here.

 

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Book Discussion: Vanni: A Family’s Struggle Through the Sri Lankan Conflict

Benjamin Dix and Lindsay Pollock will be at City to discuss their book Vanni: A Family’s Struggle Through the Sri Lankan Conflict (2019).

Date: Thursday 5 December 2019

Time: 6:00PM

Room: AG07b, City, University of London

The event is free but requires registration. All are welcome, and refreshments will be available.

Released 10 years after the end of the war, Vanni is a moving graphic novel that portrays the personal experiences of modern warfare, the processes of forced migration, and the struggles of seeking asylum in Europe.

Inspired by Benjamin Dix’s personal experience of working in Sri Lanka for the United Nations during the war, Vanni, named after the Tamil region of northern Sri Lanka, draws upon over four years of meticulous research – including first-hand interviews, references from official reports and cross-referencing with experts in the field.

Drawn by Lindsay Pollock with a real sense of immediacy, Vanni takes readers through the otherwise unimaginable struggles, horrors and life-changing decisions families and individuals are forced to make when caught in the cross hairs.

This event will feature a short talk about the graphic novel from authors Dr Benjamin Dix and Lindsay Pollock, followed by a Q&A.

About the speakers

Benjamin Dix is Senior Fellow at SOAS, University of London, and founder and Director of the non-profit organisation PositiveNegatives, which produces literary comics that explore complex social and humanitarian issues. He has worked across South Asia as a professional photographer and as a Communications and Liaison Manager for the United Nations. From 2004 -2008 he was based in the LTTE (Tamil Tigers)-controlled Vanni, in north Sri Lanka, throughout the post-tsunami reconstruction and subsequent civil war.

Lindsay Pollock is a Senior Artist at PositiveNegatives, where he has illustrated a number of testimonial comics. His work has appeared on the BBC, Channel 4 and in multiple languages across Europe, Asia and Africa. Vanni is his debut graphic novel.

The event is free but requires registration. All are welcome, and refreshments will be available.


This post reuses information taken from the original announcement at https://www.city.ac.uk/events/2019/december/vanni-a-familys-struggle-through-the-sri-lankan-conflict

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City HCID Comics Road Trip to the US Library of Congress

BL, City, AHRC CDP logos

Date: Tuesday 10 December 2019

Place: The Library of Congress, Washington, DC 

A trip home to celebrate the US Thanksgiving holiday with my family has also afforded me the first opportunity to talk about my newly-minted (2 months!) AHRC-funded PhD research working with City HCID in partnership with the British Library, under the supervision of Ernesto Priego and Stephann Makri (City) and Ian Cooke and Stella Wisdom (British Library). The studentship is funded by the Arts and Humanities Research Council’s Collaborative Doctoral Partnerships Programme.

My research will focus on UK digital comics: the process from creation to consumption (and back again?). Part of the research will involve working with City HCID to reveal the reader’s or user’s contribution in this process, as well as participate in comics scholarship.

In addition, I will be working with the British Library’s UK Web Archive, in particular its UK Digital Comics archive. Digital comics creators can upload their work directly to the BL collection through the ComicHaus app. This collaboration with ComicHaus provides a ready-made avenue for communicating with comics creators and publishers.

Which brings me to or will bring me to the Library of Congress, in Washington, DC on Tuesday 10 December 2019. The Library also has its own Web Comics Archive, and is also currently hosting an exhibit of its print comics collection, “Comic Art: 120 years of panels and pages“.

LOC logo

I will give a talk on UK Digital Comics to the Web Archiving Interest Group will cover City’s comics projects and research, such as Parables of Care and The Comics Grid: Journal of Comics Scholarship, as well as the work of the British Library. In addition, I will explain how my research fits in with the work of both institutions.

I hope to learn a lot from my visit. But I also want them to know of all the great work in the UK, and especially at City HCID!

 


Linda Berube is a PhD student at City HCID and the British Library and a member of the City HCID Comics, Games and Media Research Group. Her research is examining the use of tools, technologies and sharing of information in the production, publication, collecting and reading of web comics. After a career in the US in academic, law and public libraries, Linda came to the UK as a Fulbright Fellow and has since worked with the Legal Deposit Advisory Panel, as well as the Foreign and Commonwealth Office, the Bill and Melinda Gates Foundation and Amnesty International.