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

I Know How This Ends cover (2020)

Today I announced the release of a new output in the Parables of Care 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, designed by Simon Grennan and edited by Yours Truly,  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.

[Personal warning: where Parables of Care was a tender, sympathetic and even funny collection of practical strategies,  I Know How This Ends may prove a tougher, darker read. As Peter Wilkins put it in a message to the team, “all of the interviews were about incredible weight, abandonment and suffering”. A someone whose late father had dementia I can relate to such feelings around the care-giving experience, and I Know How This Ends indeed does attempt to represent and interpret the experiences of the care-givers the project team talked to. We believe there is no way to make up the stark reality of dementia, its difficulty and emotional intensity. It would be unethical to do so. Some readers may be disappointed not to find more hopeful optimism in the book. In I Know How This Ends stories are being told and shared, and feeling and emotion, however difficult, are being channeled and processed. I see in this act of storytelling a significant source of hope. Personally I hope the book helps communicate the problematic and painful intensity of the experience of care-giving, saying to those that might be struggling that they are not alone].

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.

My gratitude to all the members of team, as well as other colleagues, friends and family members whose direct and indirect support throughout the development of this phase of the project was essential and is sincerely appreciated.

For a list of credits and thank you’s please look inside the book. ;-)

We look forward to hearing what you think.

Podcasting for Research Dissemination: Launching the City Interaction Lab Podcast

Panel by Peter Wilkins, from I Know How This Ends
Panel by Peter Wilkins, from I Know How This Ends

City Interaction Lab Podcast – Episode 1 – Discussing Graphic Medicine and Co-Designed Comics 

Earlier this week we launched the City Interaction Lab Podcast with an inaugural episode where we talk about graphic medicine with Dr Simon Grennan (University of Chester) and Peter Wilkins (Douglas College, Vancouver Canada).

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 Scott and myself.

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

We are aware of the issues with audio levels in this episode; we’ll do better next time!

Our gratitude to Professor Martin Eve for allowing us to use his track The Learning Experience as our podcast theme track.

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.

From the original post at https://blogs.city.ac.uk/hcidcomicsgames/2019/12/09/launching-the-interaction-lab-podcast/

On the Aesthetic Education of Caregivers: Presentation Report from #GM2019 at the Parables of Care blog

This post was originally published on the Parables of Care project blog and the images are hosted there. Copying and pasting here for self-archiving purposes.

The City, University of London and Douglas College, Canada research team collaborating on comics and creativity for healthcare were present at the Graphic Medicine 2019 international conference in Brighton, UK, hosted by the Brighton and Sussex Medical School, 11-13 July 2019.

The title of this fully multidisciplinary conference this year was Queerying Graphic Medicine – Paradigms, Power and Practices.

A full report of the conference is outside the remit of this blog post. However, you can catch up with the conference hashtag on Twitter- to make that easier I created a searchable archive of the #GM2019 tweets here. There’s some excellent photos, sketches, comics, links and information that give a rich collective view of what went on.

Abi Roper (City)  Marie-Pier Caron (Douglas), Ruhina Rana (Douglas), Peter Wilkins (Douglas) and myself (City) presented in a panel in the Paradigms Panel at Room M2 on Friday 12 July 2019, from 4 to 5:30 pm. The title of the session was “On the Aesthetic Education of Caregivers. The Specificities of Form and Genre in Comics about Dementia Care”.

The presentation slides have been deposited on figshare and can be downloaded under a CC-By license as

Priego, E., Wilkins, P., Roper, A., Caron, M., et al. (2019) On the Aesthetic Education of Caregivers. The Specificities of Form and Genre in Comics about Dementia Care. Presentation. [Online]. Available from: doi: https://doi.org/10.6084/m9.figshare.8863448. [Accessed: 16 July 2019].

The audience included health care professionals, academics and artists also working on dementia, aphasia and mental care, with the conversation between audience and presenters extending beyond the Q&A and the session allocated time and offering a valuable networking opportunity to continuing or initiating further collaborations. We were all very grateful for the attentive and engaged audience who attended our session, and for their important questions and feedback.

The team also distributed free copies of both Parables of Care and the INCA Project‘s MakeWrite poetry booklet (in a limited and numbered edition handmade by Abi Roper specially for the conference). This happened both at the panel session itself and throughout the whole conference thanks to the generosity of the Waterstones table (Richard- if you read this, thank you!).

Table at conference panel room
Conference Waterstones table

The Brighton conference was a unique opportunity for the team to work together (for once not mediated by computers nor geographically separated by the 7,573 km distance between Vancouver and London, UK), to get to know each other better and strengthen our research ties. Though Simon Grennan was unfortunately unable to make it due to work commitments, he was in touch with us throughout and before the conference had ended he had already shared with us the proofs for the Parables of Care Spanish translation, which we will release before the end of the Summer. (We missed you, Simon!)

Priego, Roper, Caron, Rana, Wilkins at GM2019
Left to Right: Priego, Roper, Caron, Rana, Wilkins

The conference provided plenty of further evidence that our previous and ongoing work fits within a larger, fully international and multidisciplinary, dynamic and exciting network of individuals and organisations focused on advancing the case for the use of comics and other multimodal storytelling media within healthcare. I think it is fair to say that all of us had the most fantastic, nurturing, fun and thought-provoking time.

Thank you very much to all the GM2019 organisers, as well as all our fellow presenters and attendees, for an incredible conference.

The GM2019 conference organisers announced the Graphic Medicine will return to Toronto next year. See you in Toronto for GM2020 maybe?

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.

Parables of Care at the Graphic Medicine 2019 Conference, Brighton, UK

graphic medicine conference 2019 bannerI am pleased to (slightly belatedly) announce on this blog that our multidisciplinary panel discussing Parables of Care will feature in the programme of the Graphic Medicine 2019 international conference in Brighton, UK.

Our panel will feature team members from the UK and Canada components of the Parables of Care project.

The title of the conference this year is Queerying Graphic Medicine – Paradigms, Power and Practices and will take place 11-13 July 2019 in Brighton, UK.

 

Parabeln der Pflege: new translation of Parables of Care makes comic about dementia care available to German-speaking audiences

Cover of the German version of Parables of Care
Cover of the German version of Parables of Care

A new translation of Parables of Care makes comic about creative responses to dementia care available to German-speaking audiences

 

Download Parables of Care (original English version) from City Research Online, City, University of London: http://openaccess.city.ac.uk/18245/

Download Parabeln der Pflege. Kreative Reaktionen in der Demenzpflege, von Pflegenden erzählt [Parables of Care German version] from City Research Online, City, University of London: http://openaccess.city.ac.uk/21252/

This new German translation is also available to download from ChesterRep, University of Chester: https://chesterrep.openrepository.com/handle/10034/621804

Parables of Care. Creative Responses to Dementia Care, As Told by Carers is a research-based comic book originally published in English in October 2017.

Parables of Care has now been released in German translation, translated by Dr Andrea Hacker, from the University of Bern, Switzerland.

About working on the German translation, Dr Hacker said:

“I wanted to share Parables of Care not only with my family and the wonderful carers that help us but with a wider German-speaking audience: Alzheimer, dementia – these affect hundreds of thousands of families in the world regardless of language. Widely sharing our experiences of what works will give everyone a chance to make the best of the affliction – patients and families alike.”

[Read our Q&A with Andrea here].

The comic book was created by Dr Simon Grennan, from the Department of Art and Design, University of Chester, UK; Dr Ernesto Priego, from the Centre for Human Computer Interaction Design, City, University of London, UK; and Dr Peter Wilkins from Douglas College, Vancouver, Canada.

The short comic book includes 14 informative and touching stories, drawn by Simon Grennan with Christopher Sperandio, which were adapted from more than 100 case studies of real-life dementia care situations described by a range of carers. These case studies are available at http://carenshare.city.ac.uk/

The small international team looked to expand the accessibility of this archive of carers’ stories and found that by creating short graphic art stories they could portray the emotional power of these situations. Each story is only four panels and just one page long.

Unlike clinical descriptions, this form enhances the affective aspects of each story, putting the reader at the centre of situations that often verge on incomprehensibility, but which are all resolved. In this respect, each story is universalised and becomes a parable.

The book is available open access to dementia carers and the general public as part of ongoing engagement, training and development programmes at City, University of London, the Tavistock and Portman NHS Foundation Trust and The Faculty of Health Sciences at Douglas College, Vancouver, Canada.

About the Translator

Dr Andrea Hacker is an editor, translator and open science professional who lives in Switzerland where she works at the University of Bern. She has previously lived and worked in the US, Russia, Ireland and Germany. She was mentored in literary translation during her graduate studies at UCLA by Michael Henry Heim.

Download Parables of Care (original English version) from City Research Online, City, University of London: http://openaccess.city.ac.uk/18245/

Download Parabeln der Pflege. Kreative Reaktionen in der Demenzpflege, von Pflegenden erzählt [Parables of Care German version] from City Research Online, City, University of London: http://openaccess.city.ac.uk/21252/

Q&A with Andrea Hacker on her Parables of Care translation: https://blogs.city.ac.uk/parablesofcare/2019/01/24/parabeln-der-pflege-a-qa-with-parables-of-care-translator-andrea-hacker/

For more information, please visit: https://blogs.city.ac.uk/parablesofcare/

Press enquiries contact: John Stevenson, Senior Communications Officer, City, University of London

This post was originally published on the Parables of Care blog at https://blogs.city.ac.uk/parablesofcare/2019/01/24/parabeln-der-flege-parables-of-care-german-translation-release/

Presenting at HCID Open Day 2018: On Comics and Collaborative Art Practice as Human-Computer Interaction Methodology

The HCID Open Day 2018 is a mini conference on Friday 4th May run by the Centre for Human Computer Interaction Design (HCID) at City, University of London.

The theme for this year will be ‘Beyond the Screen’ and will focus on designing non screen based interactions, exploring technology that has made the jump from science fiction into reality and how UX thinking can be used for more than just interfaces.

I will present at the HCID Open Day 2018 as part of the knowledge exchange and impact activities around the Parables of Care project. My presentation is titled Meaningful Patterns: Comics and Collaborative Art Practice as HCI Research.’

Recent research has explored the use of collaborative art practice as a Human-Computer Interaction methodology (Kang et al 2014 and 2018; Benford et al 2013; Brynjarsdyttir et al 2013). In this talk I will describe how the Parables of Care project is employing collaborative comics-making as a user-centred methodology as a means to collect and disseminate data, reflect, design and propose strategies for dementia care.

I worked in partnership with Dr Simon Grennan of the University of Chester, Dr Peter Wilkins of Douglas College, Vancouver, Canada, an NHS Trust, and colleagues from HCID, leading the team to produce Parables of Care, that uses comics as a medium to evoke the kind of de-structured and re-structured experience of time that is akin to dementia, to illness, ageing and caring.

Register here: https://www.eventbrite.co.uk/e/hcid-open-day-2018-beyond-the-screen-tickets-44666147650

Hashtags: ;

Parables of Care is a project of the Centre for Human Computer Interaction Design, City, University of London, The University of Chester, UK, and Douglas College, Vancouver, Canada.

Parables of Care can be downloaded as a PDF file, under a Creative Commons Attribution-NonCommercial 4.0 International License, from City Research Online: http://openaccess.city.ac.uk/18245/.

If you live in the UK you can request printed copies at no cost here.

CFP: Comics and Medicine: The Ways We Work (August 16-18, 2018, Vermont)

Call for Papers: Comics and Medicine: The Ways We Work

August 16-18, 2018; White River Junction, Vermont

Via Dr Ian Williams, Graphic Medicine

 

This year’s Comics and Medicine Conference invites participants to share and reflect upon how graphic medicine works.

In the context of health and its relationship to comics, “work” can refer to a number of activities: the work of medical and related professionals; the functioning of our bodies and minds; the creation or study of artistic and educational materials; the study of the archive or images/texts; work with reader communities; and the organization of collaborative community health efforts. The spaces in which “work” takes place provide another point of reflection: public healthcare centers, classrooms, home studios, private clinics, libraries, and bedsides.

In this relatively new interdisciplinary field, we hope to document and refine—from our various perspectives and experiences—the territory where cartooning and health care intersect.

We invite the submission of a wide variety of abstracts focusing on health, medicine, and comics in any form (e.g. graphic novels and memoir, comic strips, manga, mini comics, webcomics) that examine or showcase topics including, but not limited to:

 • the use of comics and cartooning for clinical interventions and teaching

• navigating institutional headwinds

• addressing time constraints to creative work

• professional development and engagement with graphic medicine

• access to funding sources

• establishing productive collaborative relationships

• planning and completing graphic medicine projects

• engaging communities of care

• work in the context of disability justice and advocacy

• representing the ‘work’ of bodies with relation to diagnosis and treatment

• unseen labor in treatment and care

• spaces of creative production

• creative labor and the tools of graphic medicine

• outcome and efficacy research

 

Presentation Formats – please read closely as these descriptions have changed.

  • Lightning talks: These 5-minute presentations should provide an engaging and concentrated synopsis of new, ongoing, or completed scholarly, creative, or professional work in Graphic Medicine. This format is designed with the promotion of sustained conversation in mind. 
  • Oral presentations: These 15-20 minute presentations are largely for collaborative,interdisciplinary, or other work that requires and engages a longer presentation format.
  • Panel discussions: These 90-minute interviews or presentations by a panel of speakers are meant to address a single topic from a variety of perspectives.
  • Workshops: These 90-minute, hands-on, activity-driven sessions are for participants who wish to obtain particular skills with regard to comics. Suggested topics include, but are not limited to:
  • drawing for health 101
  • accessing personal stories
  • comics and storytelling
  • mini-comic tutorial

Proposal abstracts should not exceed 300 words and may be submitted in Word or PDF format. Please include the following information in this order:

• author(s)
• affiliation
• email address
• phone number
• title of abstract
• body of abstract
• sample images or web links to work being discussed (if applicable)
• presentation format preference (see options above)
• equipment needed (e.g. AV projection, whiteboard, easel, etc.)

Proposals should be submitted by January 30, 2018 to: graphic.medicine.conference@gmail.com

Abstracts will be peer-reviewed by an interdisciplinary selection committee. Notification of acceptance or rejection will be completed by the week of March 15. While we cannot guarantee that presenters will receive their first choice of presentation format, we will attempt to honor preferences, and we will acknowledge the receipt of all proposals.

Please note: Presenters are responsible for costs associated with their session (e.g. handouts and supplies) and personal expenses (travel, hotel, and registration fees). All presenters must register for the conference. Discounted rates and some limited scholarships will be available for students, artists, and others in need.

Via Dr Ian Williams, Graphic Medicine

HCID Research Seminar: Making Parables of Care

Simon Grennan, Disposession

HCID Research Seminar: Making Parables of Care – Presenting creative responses to dementia care in comic book form

Friday 17 November 2017, 1:00-1:50 PM, A214

Dr Simon Grennan (University of Chester) will present at the HCID Research Seminar series at City, University of London (College Building, Room A214) tomorrow Friday 17 November at 1pm.

All welcome. If you are not a member of City, University of London and would like to join us for this seminar, please contact Katerina.Bourazeri@city.ac.uk for further details.

This seminar will discuss the practical rationale, theorisation and production of Parables of Care, a new 16-page colour comic book, which presents creative responses to dementia care, as told by carers, derived from a group of existing case studies available at http://carenshare.city.ac.uk.

Parables of Care is an impact project of the Centre for HCID, City, University of London, the University of Chester and Douglas College, Canada. Distributed as free hard copies and a free download to carers and those engaged in debates about dementia care, the book investigates the ways in which specific habits of reading comics can be activated in order to engage readers emotionally, as well as informatively, concerning the challenges of caring for people with dementia.

Full info at https://blogs.city.ac.uk/parablesofcare/2017/11/16/hcid-research-seminar-making-parables-of-care-presenting-creative-responses-to-dementia-care-in-comic-book-form

https://www.city.ac.uk/events/2017/november/hcid-research-seminar-making-parables-of-care-presenting-creative-responses-to-dementia-care-in-comic-book-form

If you are not a member of City, University of London and would like to join us for this seminar, please contact Katerina.Bourazeri@city.ac.uk for further details.

Parables of Care can be downloaded as a PDF file, under a Creative Commons Attribution-NonCommercial 4.0 International License, from City Research Online: http://openaccess.city.ac.uk/18245/.

If you live in the UK you can request printed copies at no cost here.

Interviewed by Abi Roper re: Parables of Care

Dr Abi Roper is a Research Fellow at City, University of London. She is a speech and language therapist and researcher passionate about technology use within atypical speech & language populations.

Recently Abi asked me some questions about working on Parables of Care for the project’s blog. I have copied and pasted the original post below.


Parables of Care: A Q&A with Ernesto Priego

by Abi Roper

This post was originally published at the Parables of Care blog on 26 October 2017 at https://blogs.city.ac.uk/parablesofcare/2017/10/26/parables-of-care-a-qa-with-ernesto-priego/. If at some point in the future links to embedded media appear broken it is because the source post may have been changed location or is undergoing maintenance.

 

Dr Ernesto Priego
Dr Ernesto Priego, City, University of London

 

Ernesto Priego is a lecturer at the Centre for Human-Computer Interaction Design at City, University of London and the Editor of The Comics Grid: Journal of Comics Scholarship.

Ernesto worked in partnership with Dr Simon Grennan of the University of Chester, Dr Peter Wilkins of Douglas College, Vancouver, Canada, an NHS Trust, and colleages from HCID, leading the team to produce Parables of Care.

I asked Ernesto some questions about working on Parables of Care.

 

As a speech and language therapist researcher, I work with people who have aphasia and may have difficulty in reading large amounts of written text. People with dementia can experience similar challenges. What do you think the comics format offers that other mediums might not?

Ernesto Priego: My view is that comics are a unique medium because they often rely on a unique, complementary combination of writing, still graphic images and other components of visual communication. There are, of course, comics that are very wordy—they employ a lot (and I mean a lot) of written text. And there are, of course, comics that include almost no text at all (titles, indicia, series names are also written text). Unlike animation, video, TV or cinema, most comics, particularly printed ones, allow users / readers to linger on the comics page. Comics are therefore, in their own way, a very ‘mindful’ medium, as they often rely on a type of hyper awareness of concrete and abstract constraints, of context.

In most comics, time passes through different vehicles so to speak: through the time of the written text, the time represented through layout (panel size and arrangement and the placement of characters, backgrounds, props, narrative components), the time represented through panels in sequence and the gap between them, and the time it takes each reader to read or navigate the comic itself. So comics are a very complex medium indeed, but at the same time they give users a freedom to linger and to interpret information in a way that synchronic media such as music, video, TV or film do not allow them to.

Rather than just a question of comics being able to present ideas without the need for many words, in this case we think of comics as a medium that can actually evoke the kind of de-structured and re-structured experience of time that is akin to dementia but also to illness, ageing and caring in general (Paco Roca’s Wrinkles does this very well).

 Illustration from Wrinkles, a graphic novel by Paco Roca (© Knockabout Comics, 2015) Illustration from Wrinkles, a graphic novel by Paco Roca (© Knockabout Comics, 2015)
Illustration from Wrinkles, a graphic novel by Paco Roca. © Knockabout Comics, 2015

In many cases, people with dementia, as well as their carers, experience a time which is ‘out of joint’ (Hamlet, that tragic hero…). The fragmentary yet sequential structure of the comics in Parables of Care seeks to communicate and empathise with this experience, and in this way it attempts to share a way of experiencing the world.

I’m more familiar with comics being used to tell stories of superheroes. How are Care’N’Share stories similar and/or different to these more traditional comics narratives?

EP: That’s a very good question. For many people the term ‘comics’ means ‘superheroes’. Comics are much more than superheroes but in the case of the Care’N’Share stories the analogy achieves the status of poetic justice. Peter said in the previous Q&A that the Care’N’Share caregiver-storytellers are poets. This is true. Your question makes me think that they are similar to Romantic poets, and in this sense to heroes. Caregiving is heroic because it is a journey, and the hero’s journey is both motivated and defined by a sense of ethics, a thirst for justice and order, and fate or destiny. I also think people with dementia are poets: they see the world in a way that forces the carer and other people to realign their way of seeing things. Like the poet, they often see things that others don’t. The carer is a poet-hero because they need to learn to interpret that poetry and engage in creative endeavour themselves.

The best superhero comics, in my mind, are not about invincible heroes but about vulnerable folk that are somewhat different: their ‘superpowers’ lie in their difference and in their ability to find solutions to problems for the betterment of their communities. (Think of Peter Parker, for example). There is a lot of doubt, anxiety and pain in the hero’s journey.

Peter Parker takes care of his aunt May after she suffers a heart attack. In Stan Lee (w), Steve Ditko (p), Sam Rosen (l), The Amazing Spider-Man, Vol 1, No. 17, October 1964.
Peter Parker cares for his aunt May after she suffers a heart attack. In Stan Lee (writer), Steve Ditko (artist), Sam Rosen (letterer), The Amazing Spider-Man, Vol 1, No. 17, October 1964. © Marvel Comics
 John Keats, by Joseph Severn, 1821-1823 - NPG 58 - © National Portrait Gallery, London
John Keats, by Joseph Severn, 1821-1823 – NPG 58 – © National Portrait Gallery, London

 

The caregiver-storytellers of Care’N’Share however do not see themselves as heroes, but what they do is heroic, it requires a sacrifice and a determination that is only possible when our deepest fears are defeated and our inner super powers come to the fore. I have the uttermost respect for dementia carers/caregivers. The stories they share are lessons to us all on our duty to our fellow human beings on how to empathise with what is often completely incomprehensible and find solutions that are respectful, loving and fair.

So it’s important to say that to me the beauty of ‘Graphic Medicine’ is that it’s not about idealisation or about fitting into generic narrative structures and archetypes. It’s about the personal journey, the vulnerabilities that make us human, and discovering the ways in which we can overcome serious challenges.

 

 

http://carenshare.city.ac.uk/

 

What have you learnt about dementia through your experience in creating Parables of Care?

EP: I am still learning a lot. The statistics alone provide sufficient evidence that dementia is one of the key public health and social challenges of today, not just in the UK but around the world. Working in this project required having an open mind about what we could achieve and be willing to accept that our contribution would be relativelly small but potentially impactful on some level.

To come back to my previous answer I think all of us working in the project learnt that a lot is achievable in terms of health care of incurable conditions if there is tolerance, empathy, creativity and imagination. In general working in adapting the stories forced us to attempt walking in the carers’ shoes. Susan Sontag wrote a beautiful book discussing the im-possibility of experiencing the pain of others through photography. I hope Parables of Care can contribute to share the experience of dementia care in a respectful and sensitive way.

Where else might comics be applied in healthcare? Where do you want to go next?

EP: Ah, that is the question! Short answer: almost everywhere. We believe that comics can be brilliant health information resources. And I think that Health Informatics and Graphic Medicine are a match made in heaven. We are already working on that next step. I am definitely interested in developing more work that explicitly connects the dots between graphic narrative and User-Centred Design and Interaction Design. I won’t say more for the time being. Watch this space!

Dr Abi Roper is a Research Fellow at City, University of London. She is a speech and language therapist and researcher passionate about technology use within atypical speech & language populations.

Parables of Care can be downloaded as a PDF file, under a Creative Commons Attribution-NonCommercial 4.0 International License, from City Research Online: http://openaccess.city.ac.uk/18245/.

If you live in the UK you can request printed copies at no cost here.

This post was originally published at the Parables of Care blog on 26 October 2017 at https://blogs.city.ac.uk/parablesofcare/2017/10/26/parables-of-care-a-qa-with-ernesto-priego/. If at some point in the future links to embedded media appear broken it is because the source post may have been changed location or is undergoing maintenance.

Parables of Care: A Comic About Dementia Care, Available for Free

Parables of Care unboxed

I am very pleased that Parables of Care. Creative Responses to Dementia Care, as Told by Carers is now available. It is a 16-page publication presenting true stories of creative responses to dementia care, as told by carers.

  • Parables of Care can be downloaded as a PDF file, under a Creative Commons Attribution-NonCommercial 4.0 International License, from City Research Online: http://openaccess.city.ac.uk/18245/.
  • If you live in the UK you can request printed copies at no cost here.

The stories were adapted from a group of over 100 case studies available at http://carenshare.city.ac.uk.

Parables of Care is a project of the Centre for Human Comuter Interaction Design, City, University of London, The University of Chester, UK, and Douglas College, Vancouver, Canada.

Parables of Care was edited and adapted by Dr Simon Grennan (University of Chester) Dr Ernesto Priego (City, University of London) and Dr Peter Wilkins (Douglas College).  Parables of Care was drawn by Dr Simon Grennan with Christopher Sperandio.

Research has shown that comics have the potential to have a positive impact on the health and quality of life of people who engage in comics reading and creation, contributing to transform attitudes, awareness and behaviour around illness and contributing to create new opportunities for empowerment and more positive behaviour (Cardiff University 2014). Parables of Care explores the potential of comics to enhance the impact of dementia care research in particular.

Parables of Care seeks to make a contribution to enhancing the public impact of the best practices in dementia care resulting from City HCID research by exploring and embracing the communicative affordances of graphic storytelling in general and graphic medicine in specific.

We hope that Parables of Care contributes to enabling stronger links between academia, dementia care practice and comics scholars and practitioners.

The response so far has been amazing. Read this review by John Freeman at the British Comics site Down the Tubes, published shortly after we announced the comic publicly.

Stay tuned for news regarding distribution points, events and more information about the project!

Parables of Care received funding from the MCSE School Impact Fund, City, University of London 2016-2017.

 

Pint of Science: Comics, Humans and Technology in the Pub! 16 May 2017

I am pleased to announce I will participate at the following Pint of Science event:

Humans and technology: in life and in death

Tuesday 16 May 2017

Doors open 6.30 PM, Event 7.00 PM – 9.30 PM

The Artillery Arms 102 Bunhill Row,
London EC1Y 8ND

Come along and live it up – it’ll be dead fun.  The function room is on the first floor, with no wheelchair access.

Technology is everywhere. Its involvement in our world changes across the lifespan. This evening will explore some of the ways researchers are applying different technologies as we age. You’ll hear how technology can be used both as we live and as we die. Expert speakers from City, University of London will introduce you to a world of smart homes, virtual rehabilitation and mobile phone autopsies – a world where online comics are being used to make sense of both life and death.

Full programme info and registration at https://pintofscience.co.uk/event/humans-and-technology-in-life-and-in-death-

Hope to see you there!