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Avhandlingens titel: Ethics of User Involvement in Sensitive Design Situations
Handledare: Magnus Bergquist, professor vid Högskolan i Halmstad
Biträdande handledare: Maria Åkesson, universitetslektor vid Högskolan i Halmstad
Opponent: Maja van der Velden, docent vid Universitetet i Oslo
Sammanfattning av avhandlingen (engelska):
In this era of digital technology, there are possibilities for providing access to healthcare through the user ot
digital technology in contexts and ways that have not been feasible before. Involving users in the design process is widely accepted as crucial to success. Yet, involving users in design of healthcare technology is sociotechnically complex and sensitive. Notwithstanding that user involvement in design has been studied for decades with great progress, challenges still remain to be solved when the involved users are vulnerable and the circumstances surrounding their involvement is sensitive, for example in design of digital technology for mental health care or paediatric cancer care.
When users are involved in design under sensitive circumstances, ethical dilemmas and complex challenges are created. Participating in design activities typically requires social, cognitive and creative skills, and when individuals with limited skills in any of these areas are involved in design, the methods and techniques for their involvement have to be adapted. Furthermore, the risk of distress or harm to the participants is higher under sensitive circumstances than under non-sensitive circumstances. In the past, users have often been excluded from design in these contexts, which can not only lead to lower quality digital technology for these user groups, but it also goes against values such as ethics, democracy and empowerment.
Consequently, the aim of this thesis is to answer the question: How can users be involved in design under sensitive circumstances? In order to do so, two cases of user involvement are studied using a Design Science Research (DSR) approach. Drawing on the theory of wicked problems, the thesis presents a theoretical perspective of user involvement as a sensitive wicked problem, which contributes with an understanding of the nature of user involvement as particularly complex and ethically sensitive. Furthermore, the thesis proposes three principles for user involvement in design under sensitive circumstances: (I) groundedness; (II) supported participation; and (III) ethical reflection. The principles epitomise the values that are inherent in user involvement in design under sensitive circumstances and is intended to support others who wish to design healthcare technology.