Abstract
Vulnerability is about being at risk and it is often understood as the effect of limited physical or cognitive capabilities, such as age, frailty or illness. Vulnerable people are frequently excluded from the design of technologies that could in fact support them in tackling these risks. This paper explores designing with three vulnerable groups: children with special needs, chronically ill teenage patients, and isolated, or afraid of being so in the near future, elderly adults. We choose three distinct groups in order to show the breadth and variations in the ways in which people may be vulnerable. We looked at their digital lives and possible new risks and dependencies created by the use of digital technologies. Designing with vulnerable people is practically, methodologically, and ethically challenging. We show how methodological and reflexive sensibilities help to address these challenges and keep the design process on track.
Access this chapter
Tax calculation will be finalised at checkout
Purchases are for personal use only
Preview
Unable to display preview. Download preview PDF.
Similar content being viewed by others
References
Künemund, H., Tanschus, N.: Gero-Technology: Old Age in the Electronic Jungle. In: Komp, K., Aartsen, M. (eds.) Old Age In Europe, pp. 97–112. Springer, Netherlands (2013)
Warschauer, M.: Reconceptualizing the digital divide. First Monday 7(7) (2002), http://firstmonday.org/ojs/index.php/fm/article/view/967
Gurstein, M.: Effective use: A community informatics strategy beyond the Digital Divide. First Monday 8(12) (2003), http://firstmonday.org/ojs/index.php/fm/article/view/1107
Bødker, S.: When second wave HCI meets third wave challenges. In: Proceedings of the 4th Nordic Conference on Human-computer Interaction: Changing Roles, pp. 1–8. ACM (2006)
Newell, A.F.: Extra-ordinary human-computer interaction. In: Edwards, A.D.N. (ed.) Extra-Ordinary Human-Computer Interaction: Interfaces for Users With Disabilities. CUP Archive (1995)
Stephanidis, C. (ed.): Universal Access in HCI, Part I, HCII 2011. LNCS, vol. 6765. Springer, Heidelberg (2011)
Goldsmith, S.: Universal Design. Routledge (2012)
Grudin, J.: Groupware and social dynamics: eight challenges for developers. Commun. ACM 37(1), 92–105 (1994)
Livingstone, S., Haddon, L., Görzig, A., Ólafsson, K.: EU kids online II: final report (2011), http://www.eukidsonline.net/
Designing for and with Vulnerable People, CHI 2013 workshop (2013), http://di.ncl.ac.uk/vulnerability
Hasselbring, T.S., Glaser, C.H.W.: Use of computer technology to help students with special needs. The Future of Children, 102–122 (2000)
Alper, M., Hourcade, J.P., Gilutz, S.: Interactive technologies for children with special needs. In: Proceedings of the 11th International Conference on Interaction Design and Children, pp. 363–366. ACM (2012)
Wise, P.H.: Emerging Technologies and Their Impact on Disability. The Future of Children 22(1), 169–191 (2012)
Mintz, J., Branch, C., March, C., Lerman, S.: Key factors mediating the use of a mobile technology tool designed to develop social and life skills in children with Autistic Spectrum Disorders. Computers & Education 58(1), 53–62 (2012)
Merchant, G.: Mobile practices in everyday life: Popular digital technologies and schooling revisited. British Journal of Educational Technology 43(5), 770–782 (2012)
Gasparini, A., Culén, A.: Tablet PCs – An Assistive Technology for Students with Reading Difficulties? In: The Fifth International Conference on Advances in Computer-Human Interactions, pp. 28–34 (2012)
Hourcade, J.P., Bullock-Rest, N.E., Hansen, T.E.: Multitouch tablet applications and activities to enhance the social skills of children with autism spectrum disorders. Personal Ubiquitous Comput. 16(2), 157–168 (2012)
McClanahan, B., Williams, K., Kennedy, E., Tate, S.: A Breakthrough for Josh: How Use of an iPad Facilitated Reading Improvement. TechTrends 56(3), 20–28 (2012)
iPad gives voice to kids with autism. CNN, http://www.cnn.com/2012/05/14/tech/gaming-gadgets/ipad-autism/index.html
Benton, L., Johnson, H., Ashwin, E., Brosnan, M., Grawemeyer, B.: Developing IDEAS, pp. 2599–2608. ACM Press (2012)
Druin, A.: Mobile Technology for Children: Designing for Interaction and Learning. Morgan Kaufmann (2009)
Frauenberger, C., Good, J., Keay-Bright, W.E.: Designing Technology for Children with Special Needs - Bridging Perspectives through Participatory Design. CoDesign: International Journal of CoCreation in Design and the Arts 7, 1–28 (2011)
Guha, M.L., Druin, A., Fails, J.A.: Designing with and for children with special needs: an inclusionary model. In: Proceedings of the 7th International Conference on Interaction Design and Children, pp. 61–64 (2008)
Lewis, A., Porter, J.: Interviewing children and young people with learning disabilities: guidelines for researchers and multi-professional practice. British Journal of Learning Disabilities 32(4), 191–197 (2004)
Ljusberg, A.L., Brodin, J., Lindstrand, P.: Ethical issues when interviewing children in remedial classes. International Journal of Rehabilitation Research 30(3), 203–207 (2007)
Culén, A., Gasparini, A.: Situated Techno-Cools: factors that contribute to making technology cool. PsycNology Journal 10(2), 117–139 (2012)
Culén, A., Gasparini, A.: When is a Student-centered, Technology Supported Learning a Success? International Journal of Digital Information and Wireless Communications 2(3), 256–269 (2012)
Iversen, O.S., Halskov, K., Leong, T.W.: Rekindling values in participatory design. In: PDC 2010, pp. 91–100. ACM, New York (2010)
Teachman, G., Gibson, B.E.: Children and youth with disabilities: innovative methods for single qualitative interviews. Qualitative Health Research 23(2), 264–274 (2013)
Karpova, A., Culén, A.: Challenges in designing an app for a special education class. In: IADIS, Interfaces and Human Computer Interaction 2013, Prague, July 22-24 (2013)
Alpay, H.: Transition of the Adolescent Patient to the Adult Clinic. Peritoneal Dialysis International 29(suppl. 2), 180–182 (2009)
Callahan, S.T., Winitzer, R.F., Keenan, P.: Transition from pediatric to adult-oriented health care: a challenge for patients with chronic disease. Current Opinion in Pediatrics 13(4), 310 (2001)
Kyngäs, H.: Compliance of adolescents with chronic disease. Journal of Clinical Nursing 9(4), 549–556 (2000)
Taddeo, D., Egedy, M., Frappier, J.-Y.: Adherence to treatment in adolescents. Paediatr. Child Health 13(1), 19–24 (2008)
Nevins, T.E.: Non-compliance and its management in teenagers. Pediatric Transplantation 6(6), 475–479 (2002)
Friedman, I.M., Litt, I.F.: Adolescents’ compliance with therapeutic regimens: Psychological and social aspects and intervention. Journal of Adolescent Health Care 8(1), 52–67 (1987)
van Staa, A., Jedeloo, S., van der Stege, H.: ‘What we want’: chronically ill adolescents’ preferences and priorities for improving health care. Patient Preference and Adherence 5, 291–305 (2011)
Lugasi, T., Achille, M., Stevenson, M.: Patients’ Perspective on Factors that Facilitate Transition from Child-centered to Adult-centered Health Care: A Theory Integrated Metasummary of Quantitative and Qualitative Studies. Journal of Adolescent Health 48(5), 429–440 (2011)
Waller, A., Franklin, V., Pagliari, C., Greene, S.: Participatory design of a text message scheduling system to support young people with diabetes. Health Informatics Journal 12(4), 304–318 (2006)
Berwick, D.M.: What ‘Patient-Centered’ Should Mean: Confessions of an Extremist. Health Affairs 28(4), 555–565 (2009)
Reis, C.I., Freire, C.S., Fernández, J., Monguet, J.M.: Patient Centered Design: Challenges and Lessons Learned from Working with Health Professionals and Schizophrenic Patients in e-Therapy Contexts. In: Cruz-Cunha, M.M., Varajão, J., Powell, P., Martinho, R. (eds.) CENTERIS 2011, Part III. CCIS, vol. 221, pp. 1–10. Springer, Heidelberg (2011)
Lang, A.R., Martin, J.L., Sharples, S., Crowe, J.A., Murphy, E.: Not a minor problem: involving adolescents in medical device design research. Theoretical Issues in Ergonomics Science, 12 (2012)
van der Velden, M., Emam, K.E.: “Not all my friends need to know”: a qualitative study of teenage patients, privacy, and social media. J. Am. Med. Inform. Assoc., 16–24 (2013)
Chira, P., Nugent, L., Miller, K., et al.: Living Profiles: Design of a health media platform for teens with special healthcare needs. Journal of Biomedical Informatics 43(5(suppl.)), S.9–S.12 (2010)
Mack, R., Giarelli, E., Bernhardt, B.A.: The Adolescent Research Participant: Strategies for Productive and Ethical Interviewing. Journal of Pediatric Nursing 24(6), 448–457 (2009)
Fitton, D., Horton, M., Read, J.C., Little, L., Toth, N.: Climbing the cool wall: exploring teenage preferences of cool. In: Human Factors in Computing Systems Extended Abstracts, pp. 2093–2098. ACM (2012)
Read, J., Fitton, D., Cowan, B., Beale, R., Guo, Y., Horton, M.: Understanding and designing cool technologies for teenagers. In: Human Factors in Computing Systems, pp. 1567–1572. ACM (2011)
Machniak, M.: Sprinklr: Designing a ‘cool’ cealth-oriented social networking site with and for teenagers. Master Thesis, University of Oslo (2013)
Leist, A., Ferring, D.: Technology and Aging: Inhibiting and Facilitating Factors in ICT Use. In: Wichert, R., Van Laerhoven, K., Gelissen, J. (eds.) AmI 2011 Workshops. CCIS, vol. 277, pp. 166–169. Springer, Heidelberg (2012)
Helsedirektoratet: Welfare technology. Report on implementation of welfare technologies in the municipal health and care services 2013-2030 (2012)
Culén, A.L., Bratteteig, T.: Touch-Screens and Elderly users: A Perfect Match? In: The Sixth International Conference on Advances in Computer-Human Interactions, pp. 460–465 (2013)
Culén, A., Finken, S.: Design and Interaction in a Smart Gym: Cognitive and Bodily Mastering. In: SouthCHI 2013, July 1-3 (2013)
Dickinson, A., Arnott, J., Prior, S.: Methods for HCI research with older people. Behavior & Information Technology 26(4), 343–352 (2007)
Howthorn, D.: Possible implications of aging for interface designers. Interacting with Computers 12, 507–528 (2000)
Fisk, A.D., et al.: Designing for older Adults: Principles and Creative Human Factors Approaches. CRC Press, Boca Raton (2009)
Werner, F., Werner, K., Oberzaucher, J.: Tablets for Seniors – An Evaluation of a Current Model (iPad). In: Wichert, R., Eberhardt, B. (eds.) Ambient Assisted Living. Advanced Technologies and Societal Change, vol. 2, pp. 177–184. Springer, Heidelberg (2012)
Warin, J.: Ethical Mindfulness and Reflexivity Managing a Research Relationship With Children and Young People in a 14-Year Qualitative Longitudinal Research (QLR) Study. Qualitative Inquiry 17(9), 805–814 (2011)
Portet, F., Vacher, M., Golanski, C., Roux, C., Meillon, B.: Design and evaluation of a smart home voice interface for the elderly: acceptability and objection aspects. Pers. Ubiquit. Comput. 17, 127–144 (2013)
Vatavu, R.-D.: Nomadic gestures: A technique for reusing gesture commands for frequent ambient interactions. Journal of Ambient Intelligence and Smart Environments 4, 79–93 (2012)
Vines, J., Clarke, R., Wright, P., McCarthy, J., Olivier, P.: Configuring participation: on how we involve people in design. In: Proceedings of the SIGCHI Conference on Human Factors in Computing Systems, CHI 2013, pp. 429–438. ACM, New York (2013)
Lindsay, S., Jackson, D., Schofield, G., Olivier, P.: Engaging older people using participatory design. In: Proceedings of the 2012 ACM Annual Conference on Human Factors in Computing Systems, CHI 2012, pp. 1199–1208. ACM, New York (2012)
Perissinotto, C.M., Stijacic C., I., Covinsky, K.E.: Loneliness in older persons: a predictor of functional decline and death. Archives of Internal Medicine 172(14), 1078–1083 (2012)
Lim, L.L., Kua, E.-H.: Living Alone, Loneliness, and Psychological Well-Being of Older Persons in Singapore. Current Gerontology and Geriatrics Research 2011 (2011)
Åmdal, V.S., Klette, K., Simonsen, V.S., Ahmedov, S.: Student project “Selskap”, http://www.uio.no/studier/emner/matnat/ifi/INF2260/h12/projects/elderly/Elderly-aid-app/
Voje, A., Eggen, H., Gabrielsen, T., Vitikka, T., Bech, L.: Student project “Kamfer”, http://www.uio.no/studier/emner/matnat/ifi/INF2260/h12/projects/elderly/Kamfer/
Living Profiles–Map your Social Tree, http://livingprofiles.net/?page_id=99
Phelan, S.K., Kinsella, E.A.: Picture This... Safety, Dignity, and Voice—Ethical Research With Children Practical Considerations for the Reflexive Researcher. Qualitative Inquiry 19(2), 81–90 (2013)
Mörtberg, C., Studedahl, D.: Silences and sensibilities: increasing participation in IT design. In: Proceedings of the 4th Decennial Conference on Critical Computing: Between Sense and Sensibility, pp. 141–144 (2005)
Law, J.: After Method: Mess in Social Science Research. Routledge (2004)
Author information
Authors and Affiliations
Editor information
Editors and Affiliations
Rights and permissions
Copyright information
© 2013 Springer-Verlag Berlin Heidelberg
About this paper
Cite this paper
Culén, A.L., van der Velden, M. (2013). The Digital Life of Vulnerable Users: Designing with Children, Patients, and Elderly. In: Aanestad, M., Bratteteig, T. (eds) Nordic Contributions in IS Research. SCIS 2013. Lecture Notes in Business Information Processing, vol 156. Springer, Berlin, Heidelberg. https://doi.org/10.1007/978-3-642-39832-2_4
Download citation
DOI: https://doi.org/10.1007/978-3-642-39832-2_4
Publisher Name: Springer, Berlin, Heidelberg
Print ISBN: 978-3-642-39831-5
Online ISBN: 978-3-642-39832-2
eBook Packages: Computer ScienceComputer Science (R0)