Features

XXI.1 January - February 2014
Page: 44
Digital Citation

Special topic: Designing for and with vulnerable people


Authors:
John Vines, Róisín McNaney, Stephen Lindsay, Jayne Wallace, John McCarthy

HCI has started to explore the positive roles that technology can play in improving the lives of people facing cognitive, emotional, physical, and socioeconomic challenges. Despite this encompassing a large percentage of the population, an overarching characteristic that people facing such challenges likely share is that society considers them vulnerable in one way or another [1]. In these contexts, undertaking even the most fundamental aspects of research and design—or even just meeting with potential participants in your project—can present many unexpected and significant challenges to researchers and practitioners. This issue prompted us to organize the “Designing for and with Vulnerable People” workshop at CHI 2013 in Paris earlier this year [2].

We solicited submissions that reflected upon the challenges of designing with vulnerable people. Our goal was to encourage papers that looked beyond the development of new technologies to solve specific “problems” in people’s lives toward critically reflecting on the challenges of traditional HCI tools and techniques in the “vulnerable” context. Workshop participants represented a broad range of disciplines, including HCI, psychology, social science, psychiatry, and participatory design. We aimed to develop a shared understanding of who we considered to be vulnerable and why, and how this enabled or required a sensitive and appropriate way of working with these people in research contexts. Examples discussed at the workshop included working with individuals experiencing Asperger’s, dementia, homelessness, cerebral palsy, and grief. Despite the variety of people and conditions, many common themes were apparent.

One theme was the feeling that HCI training and education poorly prepares or sensitizes researchers to respond to the needs of vulnerable participants. The examples discussed during the workshop required the careful formation and development of relationships with participants and their support networks to build trust and to understand the complexity of participants’ lives beyond their medical diagnosis, daily tasks, or socioeconomic status. Consequently, many of the examples featured long-term engagements with user communities, with a great amount of preparatory fieldwork or participatory design activities.

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Many concerns were also raised about the ways in which we, as designers and researchers with an interest in creating digital technologies, may be portraying people as vulnerable to showcase a new application of technology, echoing Yvonne Rogers and Gary Marsden’s recent Interactions article [3]. In doing so, we might actually be making people vulnerable or exacerbating existing vulnerabilities. For example, in developing technologies to locate people with dementia who wander out of the home, might we be making them more vulnerable by signaling or highlighting a weakness (either to the individual or to others) and drawing attention to them? Indeed, even the blanket label of “vulnerable” that is imposed on people has strong connotations; thus, perceptions of an individual will change in consequence.

The workshop also highlighted several issues that routinely challenged researchers when conducting research with groups perceived to be vulnerable, such as institutions being inflexible about how information is communicated to participants (for example, with participants having special educational needs or with limited eyesight who struggle to read an informational leaflet) or how consent is gained and documented (for example, providing a signature may be challenging for people with Parkinson’s disease or who are recovering from stroke).

Discussion also revealed that institutional ethics procedures often exemplify the problematic nature of people being labeled as vulnerable. Ethical processes are often guilty of focusing on what people cannot do rather than what they can. As such, people with certain vulnerabilities may be excluded from experiencing experimental technologies that might bring great personal benefit to them. In addition, those who do participate generally have to return technology at the end of the trial or study, which at times removes a support mechanism they have come to rely on. Hindering the inclusion of vulnerable people in research denies them access to what many excluded groups need most: a chance for their voices to be heard. Indeed, it is ironic that measures conceived to protect vulnerable people may, in fact, prevent them from changing society for their purposes.

Here we have selected only a few of the key concerns raised in the workshop, scratching the surface of the discussions on that day. It became clear to attendees that best practice for designing with vulnerable people is still in need of development and attention. In this special section we present three papers that act as a starting point for reflecting on how to work within such contexts. These are a small selection of the 22 papers accepted to the workshop, but the workshop website (http://di.ncl.ac.uk/vulnerability/papers/) houses many other thoughtful contributions to and documentations of the day’s activities.

Acknowledgments

We would like to thank all of the participants who contributed to the workshop discussions and activities, and Rachel Clarke, Mario Romero, and the late Steve Howard for their support in organizing and running the workshop.

References

1. Levine, C., Faden, R., Grady, C., et al. The limitations of “vulnerability” as a protection for human research participants. The American Journal of Bioethics 4, 3 (2004), 44–49.

2. Vines, J., McNaney, R., Clarke, R., Lindsay, S., McCarthy, J., Howard, S., Romero, M., and Wallace, J. Designing for-and with- vulnerable people. Proc. CHI ‘13 Extended Abstracts. ACM, New York, 2013, 3231–3234.

3. Rogers, Y. and Marsden, G. Does he take sugar? Moving beyond the rhetoric of compassion. Interactions 20, 4 (2013), 48–57.

Authors

John Vines is a post-doctoral researcher at Culture Lab, Newcastle University. He conducts research into methods for participatory and collaborative design in the context of independent living, focusing on how methods need to be adapted and innovated in order to support the involvement of socially excluded groups in design. john.vines@ncl.ac.uk

Róisín McNaney is a Ph.D. student in the School of Computing Science at Newcastle University. A trained speech and language therapist, her main focus of work is on the design and application of pervasive technologies for clinical use in the monitoring, management, and quantification of specific aspects of care for people with Parkinson’s. r.mcnaney@ncl.ac.uk

Stephen Lindsay is a lecturer in computing science at Swansea University. His work explores the development of methods for conducting participatory design with older users and people with dementia. s.c.linday@swansea.ac.uk

Jayne Wallace is a reader in design at the University of Dundee. Her research centers on co-creative empathic design practices in the creation of digital artifacts to support well-being and sense of self. She has been working for many years with people with dementia and their caregivers. s.j.wallace@dundee.ac.uk

John McCarthy is a professor of applied psychology at University College Cork, Ireland. He and Peter Wright have written two books on experience with technology and are working on a third on participative experience in HCI. Another research interest is in designing technology to support people with dementia and their caregivers. john.mccarthy@ucc.ie

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The Digital Library is published by the Association for Computing Machinery. Copyright © 2014 ACM, Inc.

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