The Narrative Culture and Community Research Centre is delighted to welcome guest speaker Dr Ernesto Priego (City, University of London) for our second event in the Faculty Research Centre Seminar Series, details as follows:
3pm, Wednesday 25 November 2020
Using Narrative Design Strategies to Convey the Experience of Dementia Care-Giving: The Parables of Care Project
Dr Ernesto Priego, City, University of London
Read some pages from Parables of Care here:
Priego, E. , Wilkins, P., Martins, M. and Grennan, S. (2020). I Know How This Ends: Stories of Dementia Care. London: City, University of London, University of Chester, and Douglas College. ISBN 978-1-9163600-0-6 https://openaccess.city.ac.uk/id/eprint/23705/
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 https://openaccess.city.ac.uk/id/eprint/18245/
Priego, E. and Wilkins, P. (2020). Comics as Covid-19 response: Visualizing the experience of videoconferencing with aging relatives. ACM Interactions, XXVII, doi: https://doi.org/10.1145/3404207(open access version at https://openaccess.city.ac.uk/id/eprint/24428/ )
Summary of talk:
Parables of Care: Creative Responses to Dementia Care is an international collaborative project that explores the potential of co-designed comics to enhance the impact of dementia care research enabled by the partnership between the Centre for Human-Computer Interaction Design, City, University of London; the University of Chester and Douglas College, Canada.
The World Health Organisation has anticipated that by 2030, 82 million people will have dementia and 152 million by 2050. In this seminar I will discuss the outputs of a project that aims to make a contribution to widen the dissemination of research on one of the key challenges of our time, following user-centred design and narrative research design methods.
After a brief introduction to dementia and key stats about it, I will discuss the motivations, methods and related aspects of two recent comic books resulting from a project I have led since 2017. One is Parables of Care: creative responses to dementia care (Grennan, Priego, Sperandio, Wilkins 2017) and the other one is I Know How This Ends: Stories of Dementia Care (Priego, Wilkins, Martins, Grennan 2020). Both comic books are attempts to think about the concept of "Graphic Medicine" as developed by Ian Williams, MK Czerwiec and others (Farthing and Priego 2016), and of the methodologies that need conceptualising around using comics comics to communicate research (Priego 2016).
The stories in Parables of Care were adapted from a group of over 100 case studies of real-life dementia care situations described by a wide range of carers, available as the the Care‘n’Share dataset at http://carenshare.city.ac.uk. This comic sought to expand the impact of this online archive of carers' stories, according to developments in the instrumental use of comics in health care situations (El Refaie 2014).
In the seminar will discuss the concepts of ambiguity, fracture and the genre of the parable, and the ways in which the team identified hypotactic correspondences between the form of the Care‘n’Share dataset, the emotional characteristics of the stories of care and knowledge of a formal tradition of comics storytelling, Yonkoma, in which each story is comprised of only four panels. I will also describe how the authors identified correspondences between a specific sensation (emotional ambiguity) and a specific existing representative form (Yonkoma).
On the other hand I Know How This Ends presents 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. Whereas Parables of Care employed the form of the parable to tell individual stories based in real-life cases as told by carers, I Know How This Ends 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.
Both comic books have been made available free to dementia carers and the public as part of ongoing engagement, training and development programmes by the partners. The seminar will expand on the narrative co-design methods employed in the creation of both comic books, and will describe all the tasks required to not only develop the outputs but set them in motion through licensing, distribution, dissemination and public engagement, in an attempt to fully place the users/readers in the centre of the research and development cycle.
Grennan, S., Priego, E., Sperandio, C. & 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. Available at http://openaccess.city.ac.uk/18245/ and https://blogs.city.ac.uk/parablesofcare/.
El Refaie, e. et al. Improving HIV/AIDS education and support in KwaZulu-Natal through comics drawing. REF 2014 Impact Case Study. Available at http://impact.ref.ac.uk/CaseStudies/CaseStudy.aspx?Id=3582#.
Farthing, A. and Priego, E., 2016. ‘Graphic Medicine’ as a Mental Health Information Resource: Insights from Comics Producers. The Comics Grid: Journal of Comics Scholarship, 6, p.3. DOI: http://doi.org/10.16995/cg.74
Priego, E., 2016. Comics as Research, Comics for Impact: The Case of Higher Fees, Higher Debts. The Comics Grid: Journal of Comics Scholarship, 6, p.16. DOI: http://doi.org/10.16995/cg.101
Priego, E. , Wilkins, P., Martins, M. and Grennan, S. (2020). I Know How This Ends: Stories of Dementia. London: City, University of London, University of Chester, and Douglas College. ISBN 978-1-9163600-0-6. Available at https://openaccess.city.ac.uk/id/eprint/23705/ and https://blogs.city.ac.uk/parablesofcare/.
Dr Ernesto Priego is a lecturer at the Centre for Human-Computer Interaction Design, City, University of London. He is a co-founder and Editor-in-Chief of The Comics Grid: Journal of Comics Scholarship. He is always doing stuff, and tweets about it from @ernestopriego and epriego.blog.