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Wickedness in Design for People Diagnosed with Schizophrenia
Halmstad University, School of Information Technology, Halmstad Embedded and Intelligent Systems Research (EIS), Man and Information technology laboratory (MI-lab).ORCID iD: 0000-0002-8596-2027
2018 (English)In: Scandinavian Journal of Information Systems, ISSN 0905-0167, E-ISSN 1901-0990, Vol. 30, no 1, p. 47-77, article id 2Article in journal (Refereed) Published
Abstract [en]

With the digitisation of society, e-health technology increasingly supports new design situations that extend those traditional to Information Systems, and therefore need to be better understood. In design for complex, new and sensitive design situations, it is not possible to apply known methods and solutions without a deeper situational understanding. These design situations are fraught with wicked problems that are contradictory and complex. This paper intends to answer how the wickedness of the design situation when designing e-health technology for people diagnosed with schizophrenia can be understood and what consequences the design situation has for the design process. The paper presents a grounded theory analysis of stakeholder interviews and focus group interviews with people diagnosed with schizophrenia. Four wicked problems are identified: struggle of dependence, contradiction of social interaction, contradiction of trust and counteracting improvement behaviour. The problems are interrelated and have consequences for the design, acceptance, use and user involvement in design of e-health technology for people diagnosed with schizophrenia. The paper also shows the viability of using grounded theory for studying and describing situational wickedness. © Scandinavian Journal of Information Systems, 2018.

Place, publisher, year, edition, pages
Aalborg: I R I S Association , 2018. Vol. 30, no 1, p. 47-77, article id 2
Keywords [en]
e-health, wicked problems, wickedness, schizophrenia, grounded theory, design
National Category
Human Computer Interaction Information Systems Information Systems, Social aspects
Identifiers
URN: urn:nbn:se:hh:diva-38651Scopus ID: 2-s2.0-85049948489OAI: oai:DiVA.org:hh-38651DiVA, id: diva2:1272992
Available from: 2018-12-20 Created: 2018-12-20 Last updated: 2018-12-20Bibliographically approved
In thesis
1. Ethics of User Involvement in Sensitive Design Situations
Open this publication in new window or tab >>Ethics of User Involvement in Sensitive Design Situations
2018 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

While this era of digital technology brings great possibilities for improving the lives of many people with digital healthcare services, the design of these services in turn present challenges that are ethical in nature. Participatory Design (PD) values user involvement in design from a democratic, empowerment and ethical perspective. However, the design of digital healthcare services constitutes sensitive design situations, that is, situations that have the potential to negatively impact the participants. As a consequence, participation in these design situations involves risks, causing ethical dilemmas. The ethical dilemmas that designers face in sensitive design situations are situated, dynamic, diverse, unpredictable, and occur in-action. Yet, it is a complex field with little in situ support for designers who intend to involve users in sensitive design situations, and high complexity and risk increase the need to understand ethics in these situations. Consequently, this thesis intends to answer the question: How can users be involved in sensitive design situations?

The research question has emerged from the study of two design projects and is addressed through a Design Research (DR) approach. Both projects aimed at designing Digital Peer Support (DPS); one designs DPS for children between 8-12 cured from cancer, and the other designs DPS for people diagnosed with schizophrenia. The DR approach enables the study of de facto design situations in the two design projects. The thesis consists of a collection of five papers and a cover paper.

The results show that, in sensitive design situations it can be challenging to uphold the fundamental ethical commitments of PD: that participation is a democratic right, the user is the expert, design should enhance, and design is situated. Based on the empirical study, I propose four principles for ethics in sensitive design situations that aim to support the upholding of these ethical commitments: (I) the principle of enhancement; (II) the principle of acknowledgement; (III) the principle of advocacy; and (IV) the principle of accommodation.

The research contributes to the discourse on ethics in PD by expanding the understanding of ethical values of user involvement. Ethical guidelines must be dynamic and responsive, and participation should be carried out using methods for continuous critical reflection. The research contributes to practice by providing practical guidance for those who intend to involve users in sensitive design situations, ethical review boards who review PD, and for training of future PD researchers.

Place, publisher, year, edition, pages
Halmstad: Halmstad University Press, 2018. p. 202
Series
Halmstad University Dissertations ; 45
Keywords
ethics, participatory design, user involvement, design research, children, schizophrenia, cancer, sensitive, vulnerable, design, participation, principles, digital peer support
National Category
Information Systems
Identifiers
urn:nbn:se:hh:diva-36396 (URN)978-91-87045-92-9 (ISBN)978-91-87045-93-6 (ISBN)
Public defence
2018-04-10, Wigforssalen, Visionen, Högskolan i Halmstad, Kristian IV:s väg 3, Halmstad, 13:00 (English)
Opponent
Supervisors
Available from: 2018-03-08 Created: 2018-03-08 Last updated: 2018-12-20Bibliographically approved

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Lindberg, Susanne

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