Article

Participatory design with individuals who have amnesia

Authors:

Brian Richards,

Ron BaeckerAuthors Info & Claims

PDC 04: Proceedings of the eighth conference on Participatory design: Artful integration: interweaving media, materials and practices - Volume 1

Pages 214 - 223

https://doi.org/10.1145/1011870.1011895

Published: 27 July 2004 Publication History

Abstract

We present experiences and insights into participatory design with individuals who have anterograde amnesia and therefore have extreme difficulty storing new memories. We discuss our design of the design process, and present a set of techniques used to support memory during and between design sessions. From this experience, we identify cognitive assumptions of participatory design that break down when working with amnestics. We generalize these ideas into an analytical framework for researchers and practitioners who intend to use participatory design with persons having various kinds of cognitive impairments. We illustrate the framework by analyzing a cognitive deficit unrelated to memory that we encountered, and an unanticipated benefit from what at first appeared to be a liability in working with this design team.

References

[1]

Bødker, S., Ehn, P., Kammersgaard, J., Kyng, M., & Sundblad, Y. (1987). A UTOPIAN experience: On design of powerful computer-based tools for skilled graphic workers. In G. Bjerknes, P. Ehn, and M. Kyng (eds.), Computers and Democracy - a Scandinavian Challenge. p. 251--278.

[2]

Cole, E., Dehdashti, P., Petti, L., & Angert, M. (1994). Participatory design for sensitive interface parameters: contributions of traumatic brain injury patients to their prosthetic software. In Proceedings of the SIGCHI conference on Human factors in computing systems, p. 115--116.

Digital Library

[3]

Cole, E., & Dehdashti, P. (1998). Computer-based cognitive prosthetics: assistive technology for the treatment of cognitive disabilities. In Proceedings of the international ACM conference on Assistive Technologies, p.11--18.

Digital Library

[4]

Craik, F., Anderson, N., Kerr, S., & Li, K. (1995). Memory Changes in Normal Ageing. In A. Baddeley, B. Wilson, & F.Watts (eds.), Handbook of Memory Disorders. John Wiley & Sons. p. 211--241.

[5]

Curran, T., & Schacter, D. (2000). Cognitive Neuropsychological Issues. In M. Farah & T. (eds.), Patient-Based Approaches to Cognitive Neuroscience. The MIT Press. p. 291--299.

[6]

Druin, A. (1999). Cooperative inquiry: Developing new technologies for children with children. In Proceedings othe SIGCHI conference on Human factors in computing systems, ACM Press. p. 223--230.

Digital Library

[7]

Druin, A. (1999). The Role of Children in the Design of New Technology, Behaviour and Information Technology (BIT), 21 (1), p. 1--25.

[8]

Druin, A., Bederson, B., Boltman, A., Mirua, A., Knotts-Callahan, D., and Platt, M. (1998). Children as Our Technology Design Partners. In A. Druin (ed.), The Design of Children's Technology: How we design and why?, Morgan Kaufmann, p. 51--72.

Digital Library

[9]

Farber, A., Druin, A., Chipman, G., Julian, D., & Somashekhar, S. (2002). How Young Can Our Design Partners Be? In Proceedings of the Participatory DesignConference, p. 272--277.

[10]

Fischer, G., & Sullivan, J. Jr. (2002). Human-Centered Public Transportation Systems for Persons with Cognitive Disabilities. In Proceedings of the Participatory Design Conference, p. 194--198.

[11]

Graf, P., & Schacter, D. L. (1985). Implicit and explicit memory for new associations in normal and amnesic subjects. Journal of Experimental Psychology: Learning, Memory and Cognition, 11, p. 501--518.

[12]

Kapur, N. (1995). Memory Aids in the Rehabilitation of Memory Disordered Patients. In A. Baddeley, B. Wilson, & F. Watts (eds.), Handbook of Memory Disorders. John Wiley & Sons. p. 533--556.

[13]

Kensing, J., Simonsen, J., Bødker, S. (1996). MUST: a Method for Participatory Design. In Proceedings of the Participatory Design Conference, p. 129--140.

[14]

LoPresti, E.F. Mihailidis, A., Kirsch, N. (2004). Assistive technology for cognitive rehabilitation: State of the art. Neuropsychological Rehabilitation, 14 (1/2), p. 5--39.

[15]

Madsen, K. (1996). Initiative in Participatory Design. In Proceedings of the Participatory Design Conference, p. 223--230.

[16]

McGrenere, J., Davies, R., Findlater, L., Graf, P., Klawe, M., Moffatt, K., Purves, B., & Yang, S. (2003). Insights from the Aphasia Project: Designing Technology for and with People Who Have Aphasia. In Proceedings of the ACM Conference on Universal Usability, p. 112--118.

Digital Library

[17]

Moffatt, K., McGrenere, J., Purves, B., Klawe, M. (2004). The participatory design of a sound and image enhanced daily planner for people with aphasia. In the Proceedings of the SIGCHI conference on Human factors in computing system, p. 407--414.

Digital Library

[18]

Moran, P., & Carroll J. (1996). Design Rationale: Concepts, Techniques, and Use. Lawrence Erlbaum Associates.

Digital Library

[19]

Muller, M., Halkswanter, J. & Dayton, T. (1997). Participatory practices in the software lifecycle. In M. Helander, T. Landauer & P. Prabhu (eds.), Handbook of Human-Computer Interaction. 2<<Sup>nd</Sup> edition. Elsevier. p. 255--313.

[20]

Muller, M. (2002). Participatory Design: The Third Space. In J. Jacko & A. Sears (eds.), The Human-Computer Interaction Handbook: Fundamentals, Evolving Technologies and Emerging Applications. Lawrence Erlbaum Associates.

Digital Library

[21]

Squire, L.R. (1982). The neuropsychology of human memory. Annual Review of Neuroscience, 5, p. 241--273.

[22]

Snyder, C. (2003). Paper Prototyping: The Fast and Easy Way to Design and Refine User Interfaces, Morgan Kaufmann Publishers.

[23]

Sohlberg, M. M. & Mateer, C. A. (2001). Cognitive Rehabilitation: An integrative neuropsychological approach. The Guilford Press.

[24]

Wilson, B. (1999). Case Studies in Neuropsychological Rehabilitation, Oxford University Press.

[25]

Wilson, B. (2002). Memory Rehabilitation. In L. Squire, & D. Schacter (eds.), Neuropsychology of Memory. 3<<Sup>rd</Sup> edition. The Guilford Press. p. 263--272.

[26]

Wu, M. (2004). The Participatory Design of an Orientation Aid for People with Amnesia. M.Sc. Thesis. Department of Computer Science, University of Toronto.

Cited By

de Faria Borges LBertholdo AFilgueiras LMaciel CPereira Vdos Santos Nunes E(2024)Motivation of persons with cerebral palsy through participatory design: where there is a will, there is a wayUniversal Access in the Information Society10.1007/s10209-024-01131-0Online publication date: 22-Jun-2024
https://doi.org/10.1007/s10209-024-01131-0
Çarçani KBratteteig THolone HHerstad J(2023)EquiP: A Method to Co-Design for CooperationComputer Supported Cooperative Work (CSCW)10.1007/s10606-023-09463-w32:3(385-438)Online publication date: 21-Mar-2023
https://doi.org/10.1007/s10606-023-09463-w
Woodward KKanjo EBrown DMcGinnity THarold G(2023)In the hands of users with intellectual disabilities: co-designing tangible user interfaces for mental wellbeingPersonal and Ubiquitous Computing10.1007/s00779-023-01752-x27:6(2171-2191)Online publication date: 1-Dec-2023
https://dl.acm.org/doi/10.1007/s00779-023-01752-x
Show More Cited By

Index Terms

Participatory design with individuals who have amnesia
1. Social and professional topics
  1. Professional topics
    1. Computing profession
      1. Assistive technologies
  2. User characteristics
    1. People with disabilities

Recommendations

Participatory design of an orientation aid for amnesics
CHI '05: Proceedings of the SIGCHI Conference on Human Factors in Computing Systems

We present the participatory design and evaluation of an orientation aid for individuals who have anterograde amnesia. Our design team included six amnesics who have extreme difficulty storing new memories. We describe the methods we used to enable the ...
The role of design fiction in participatory design processes
NordiCHI '18: Proceedings of the 10th Nordic Conference on Human-Computer Interaction

Participatory design is in essence very malleable as any design technique could lend itself to it, as long as users and stakeholders are involved. Design fictions however, have more often been used as either a vehicle for critical designs, or as a sheer ...
Customizing a communication device for a child with cerebral palsy using participatory design practices: contributions towards the PD4CAT method
IHC '12: Proceedings of the 11th Brazilian Symposium on Human Factors in Computing Systems

Participatory Design (PD) is frequently cited as a convenient approach for designing high assistive technology (HAT) for people with serious speech impairments. However, these reports show that PD is used in an ad hoc fashion, while a methodological ...

Comments

Information & Contributors

Information

Published In

cover image ACM Conferences

PDC 04: Proceedings of the eighth conference on Participatory design: Artful integration: interweaving media, materials and practices - Volume 1

July 2004

245 pages

ISBN:1581138512

DOI:10.1145/1011870

Conference Chairs:
Andrew Clement
University of Toronto, Canada
,
Peter van den Besselaar
NIWI, Royal Netherlands Academy of Arts and Sciences, Netherlands

Copyright © 2004 ACM.

Permission to make digital or hard copies of all or part of this work for personal or classroom use is granted without fee provided that copies are not made or distributed for profit or commercial advantage and that copies bear this notice and the full citation on the first page. Copyrights for components of this work owned by others than ACM must be honored. Abstracting with credit is permitted. To copy otherwise, or republish, to post on servers or to redistribute to lists, requires prior specific permission and/or a fee. Request permissions from [email protected]

Sponsors

CPSR: Computer Professionals for Social Responsibility
ACM: Association for Computing Machinery

Publisher

Association for Computing Machinery

New York, NY, United States

Publication History

Published: 27 July 2004

Permissions

Request permissions for this article.

Request Permissions

Check for updates

Author Tags

Qualifiers

Article

Acceptance Rates

Overall Acceptance Rate 49 of 289 submissions, 17%

Contributors

Other Metrics

View Article Metrics

Bibliometrics & Citations

Bibliometrics

Article Metrics

37
Total Citations
View Citations
1,433
Total Downloads

Downloads (Last 12 months)26
Downloads (Last 6 weeks)1

Reflects downloads up to 03 Mar 2025

Other Metrics

View Author Metrics

Citations

Cited By

de Faria Borges LBertholdo AFilgueiras LMaciel CPereira Vdos Santos Nunes E(2024)Motivation of persons with cerebral palsy through participatory design: where there is a will, there is a wayUniversal Access in the Information Society10.1007/s10209-024-01131-0Online publication date: 22-Jun-2024
https://doi.org/10.1007/s10209-024-01131-0
Çarçani KBratteteig THolone HHerstad J(2023)EquiP: A Method to Co-Design for CooperationComputer Supported Cooperative Work (CSCW)10.1007/s10606-023-09463-w32:3(385-438)Online publication date: 21-Mar-2023
https://doi.org/10.1007/s10606-023-09463-w
Woodward KKanjo EBrown DMcGinnity THarold G(2023)In the hands of users with intellectual disabilities: co-designing tangible user interfaces for mental wellbeingPersonal and Ubiquitous Computing10.1007/s00779-023-01752-x27:6(2171-2191)Online publication date: 1-Dec-2023
https://dl.acm.org/doi/10.1007/s00779-023-01752-x
Mohatt NKreisel CBrenner L(2021)Engaging Those Living With Moderate to Severe TBI and Their Caregivers in ResearchJournal of Patient Experience10.1177/23743735219988528Online publication date: 3-Mar-2021
https://doi.org/10.1177/2374373521998852
Buruk OHamari J(2021)Immersive Video Sketching: Low-Fidelity Extended Reality Prototyping for EveryoneProceedings of the 24th International Academic Mindtrek Conference10.1145/3464327.3464330(165-175)Online publication date: 1-Jun-2021
https://dl.acm.org/doi/10.1145/3464327.3464330
Rodil KElisabeth Larsen CCaesar Faelled CFærch Skov EGustafsen TKrummheuer ARehm MLamas DSarapuu HŠmorgun IBerget G(2020)Spending Time: Co-Designing a Personalized Calendar at the Care CenterProceedings of the 11th Nordic Conference on Human-Computer Interaction: Shaping Experiences, Shaping Society10.1145/3419249.3420144(1-11)Online publication date: 25-Oct-2020
https://dl.acm.org/doi/10.1145/3419249.3420144
Hamidi FOwuor PHynie MBaljko MMcGrath S(2018)Potentials of Digital Assistive Technology and Special Education in KenyaAutism Spectrum Disorders10.4018/978-1-5225-3827-1.ch009(162-182)Online publication date: 2018
https://doi.org/10.4018/978-1-5225-3827-1.ch009
Giles Evan der Linden JPetre MMandryk RHancock MPerry MCox A(2018)Weaving Lighthouses and Stitching StoriesProceedings of the 2018 CHI Conference on Human Factors in Computing Systems10.1145/3173574.3174044(1-12)Online publication date: 21-Apr-2018
https://dl.acm.org/doi/10.1145/3173574.3174044
Lazar AFeuston JEdasis CPiper AMandryk RHancock MPerry MCox A(2018)Making as ExpressionProceedings of the 2018 CHI Conference on Human Factors in Computing Systems10.1145/3173574.3173925(1-16)Online publication date: 21-Apr-2018
https://dl.acm.org/doi/10.1145/3173574.3173925
Drain AMcCreery MShekar AGrigg N(2018)The Collaborative Design of a Low-Cost, Accessible Rice Seeder for Rural Cambodia: Trade-Offs and Challenges2018 IEEE Global Humanitarian Technology Conference (GHTC)10.1109/GHTC.2018.8601663(1-7)Online publication date: Oct-2018
https://doi.org/10.1109/GHTC.2018.8601663
Show More Cited By

View Options

Login options

Check if you have access through your login credentials or your institution to get full access on this article.

Full Access

Get this Publication

View options

PDF

View or Download as a PDF file.

eReader

View online with eReader.

Figures

Tables

Media

View Table of Conten