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Unlocking design potential: Design with 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
Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI), Health and Nursing.ORCID iD: 0000-0001-9753-0988
Halmstad University, School of Information Technology, Halmstad Embedded and Intelligent Systems Research (EIS), Man and Information technology laboratory (MI-lab).ORCID iD: 0000-0002-6453-3653
2017 (English)In: Informatics for Health and Social Care, ISSN 1753-8157, E-ISSN 1753-8165Article in journal (Refereed) Epub ahead of print
Abstract [en]

With the expansion of e-health systems to more diverse and heterogeneous contexts and user groups, it is increasingly important to include users in design. Designers recognize the benefits of user participation, but including users with lowered cognitive and social abilities can be difficult. This paper intends to answer how these users can participate in the design of e-health systems. We conducted a case study with stakeholder interviews and design workshops with users diagnosed with schizophrenia to identify and overcome the challenges for participation. From the stakeholder interviews, we identified challenges relating to social interaction, technical experience, cognitive ability, and loss of individuality. We designed workshops that addressed these challenges and identify five strategies for unlocking the design potential of the participants: (1) work together with concrete materials and examples; (2) maintain a positive focus; (3) accept all ideas; (4) maintain and require realism; and (5) use previous interaction. We conclude that, when supported appropriately, it is possible to involve people diagnosed with schizophrenia. We also highlight the difficulty for someone not self-experienced to understand contexts as challenging and sensitive as this, and thus the value of user participation. © 2017 Taylor & Francis

Place, publisher, year, edition, pages
Abingdon: Taylor & Francis, 2017.
Keywords [en]
Case study, design, participation, schizophrenia, strategy
National Category
Interaction Technologies Other Medical Sciences not elsewhere specified
Identifiers
URN: urn:nbn:se:hh:diva-34901DOI: 10.1080/17538157.2017.1363762PubMedID: 28853962Scopus ID: 2-s2.0-85028544974OAI: oai:DiVA.org:hh-34901DiVA, id: diva2:1139652
Available from: 2017-09-08 Created: 2017-09-08 Last updated: 2018-03-08Bibliographically 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: 2018-03-12Bibliographically approved

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Lindberg, SusanneJormfeldt, HenrikaBergquist, Magnus

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