Participatory design with proxies: developing a desktop-PDA system to support people with aphasia

ABSTRACT

In this paper, we describe the design and preliminary evaluation of a hybrid desktop-handheld system developed to support individuals with aphasia, a disorder which impairs the ability to speak, read, write, or understand language. The system allows its users to develop speech communication through images and sound on a desktop computer and download this speech to a mobile device that can then support communication outside the home. Using a desktop computer for input addresses some of this population's difficulties interacting with handheld devices, while the mobile device addresses stigma and portability issues. A modified participatory design approach was used in which proxies, that is, speech-language pathologists who work with aphasic individuals, assumed the role normally filled by users. This was done because of the difficulties in communicating with the target population and the high variability in aphasic disorders. In addition, the paper presents a case study of the proxy-use participatory design process that illustrates how different interview techniques resulted in different user feedback.

REFERENCES

• 1: The aphasia institute: What is aphasia? http://www.aphasia.ca/about/whatis.html
• 2: Beukelman, D.R., and Mirenda, P. Augmentative and alternative communication: Management of severe communication disorders in children and adults (2nd Ed.). Paul H. Brooks Publishing Co, Baltimore, MD, USA, 1998.
• 3: Bungalow Software. http://www.bungalowsoftware.com.
• 4: Carmien, S. MAPS: PDA scaffolding for independence for persons with cognitive impairments. Human-computer interaction consortium (2002). http://www.cs.colorado.edu/~l3d/clever/projects/maps/carmien_HCIC2002.pdf.
• 5: Tira Cohene , Ron Baecker , Elsa Marziali, Designing interactive life story multimedia for a family affected by alzheimer's disease: a case study, CHI '05 extended abstracts on Human factors in computing systems, April 02-07, 2005, Portland, OR, USA [doi>10.1145/1056808.1056901]
• 6: Davies, R. The Ethnographically Informed Participatory Design of a PDA Application to Support Communication. Master's Thesis, University of British Columbia, Canada, 2004.
• 7: Rhian Davies , Skip Marcella , Joanna McGrenere , Barbara Purves, The ethnographically informed participatory design of a PD application to support communication, Proceedings of the 6th international ACM SIGACCESS conference on Computers and accessibility, October 18-20, 2004, Atlanta, GA, USA
• 8: Dynavox Systems. http://www.dynavoxsys.com.
• 9: Enkidu Research. http://www.enkidu.net.
• 10: Goodglass, H., Kaplan, E., and Barresi, B. The assessment of aphasia and related disorders (3rd Ed.). Lippincott Williams, & Wilkins, Philadelphia, PA, USA, 2001.
• 11: Gus Communications. http://www.gusinc.com.
• 12: Hine, N., Arnott, D., and Smith, D. (2003). Design issues encountered in the development of a mobile multimedia augmentative communication service. In Universal Access in the Information Society 2 (2003), 255--264.
• 13: Tad Hirsch , Jodi Forlizzi , Elaine Hyder , Jennifer Goetz , Chris Kurtz , Jacey Stroback, The ELDer project: social, emotional, and environmental factors in the design of eldercare technologies, Proceedings on the 2000 conference on Universal Usability, p.72-79, November 16-17, 2000, Arlington, Virginia, United States [doi>10.1145/355460.355476]
• 14: Inglis, E.A., Szymkowiak, A., Gregor, P., Newell, A. F., Hine, N., Shah, P., Wilson, B.A. and Evans, J. Issues Surrounding the User-Centred Development of a new Interactive Memory Aid. In Universal Access in the Information Society 2, 3(2003), 226--234.
• 15: Kauhanen, M.L., Korpelainen, J. T., Hiltunen, P., Määttä, R., Mononen, H., Brusin, E., et al. Aphasia, depression, and non-verbal cognitive impairment in ischaemic stroke. Cerebrovascular Diseases 10, 6 (2000), 455--461.
• 16: Lingraphicare, Inc. http://www.aphasia.com.
• 17: Martin, C., Dellatolas, G., Viguier, D., Willadino-Braga, L., and Deloche, G. Subjective experience after stroke. Applied Neuropsychology 9, 3 (2002), 148--158.
• 18: Moffatt, K. Designing Technology For and With Special Populations: An Exploration of Participatory Design with People with Aphasia. Master's Thesis, University of British Columbia, Canada, 2004.
• 19: Karyn Moffatt , Joanna McGrenere , Barbara Purves , Maria Klawe, The participatory design of a sound and image enhanced daily planner for people with aphasia, Proceedings of the SIGCHI conference on Human factors in computing systems, p.407-414, April 24-29, 2004, Vienna, Austria [doi>10.1145/985692.985744]
• 20: Paul, D.R., Frattali, C.M., Holland, A.L., Thompson, C.K., Caperton, C.J., and Slater S.C. Quality of Communication Life Scale (ASHA QCL). American Speech-Language-Hearing Association, Rockville, MD, USA, 2004.
• 21: Prentke Romich Company. http://www.prentrom.com.
• 22: Mary Beth Rosson , John M. Carroll, Usability engineering: scenario-based development of human-computer interaction, Morgan Kaufmann Publishers Inc., San Francisco, CA, 2001
• 23: Thorburn, L., Newhoff, M., and Rubin, S. Ability of subjects with aphasia to visually analyze written language, pantomime, and iconographic symbols. American Journal of Speech-Language Pathology 4 (1995), 174--179.
• 24: Waller, A., Dennis, F., Brodie, J., and Cairns, A.Y. Evaluating the use of TalksBac, a predictive communication device for nonfluent adults with aphasia. International Journal of Language and Communication Disorders 33, 1 (1998), 45--70.
• 25: Waller, A. and Newell, A. Towards a narrative-based augmentative communication system. European Journal of Disorders of Communication 32 (1997), 289--306.
• 26: Mike Wu , Ron Baecker , Brian Richards, Participatory design of an orientation aid for amnesics, Proceedings of the SIGCHI conference on Human factors in computing systems, April 02-07, 2005, Portland, Oregon, USA [doi>10.1145/1054972.1055043]

INDEX TERMS

Primary Classification:
  K. Computing Milieux
  K.4 COMPUTERS AND SOCIETY
      K.4.2 Social Issues

Additional Classification:
  H. Information Systems
  H.5 INFORMATION INTERFACES AND PRESENTATION (I.7)
      H.5.2 User Interfaces (D.2.2, H.1.2, I.3.6)

Keywords:
aphasia, assistive technology, multi-modal interfaces, participatory design