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Evaluating Digital Peer Support for Children Cured from Cancer
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).ORCID iD: 0000-0003-4438-6673
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
Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI).ORCID iD: 0000-0002-3576-2393
2017 (English)In: International Journal of Human-Computer Interaction, ISSN 1044-7318, E-ISSN 1532-7590, Vol. 33, no 8, p. 664-676Article in journal (Refereed) Published
Abstract [en]

This article describes a case study of the challenges that emerged from a formative evaluation process with the purpose of evaluating a digital peer support (DPS) service for children between 8 and 12 cured from cancer. The evaluation of DPS for children is particularly challenging. While the literature on evaluation with children is extensive, challenges such as risk assessment that become prevalent in the evaluation of DPS are not highlighted. This case study analyzes how the DPS service was evaluated over the course of two usability tests, a two-week diary study, a focus group interview, and a survey. Challenges relating to ethics, trust, risk assessment, and recruitment emerged during the evaluation process. We identify key strategies to handle these challenges: progression, proxies, and reflection. Performing a multistage evaluation process with progressing sensitivity allowed control of some of the complexities of the context in order to balance the degree of the children’s involvement with the degree of sensitivity. © 2017 Taylor & Francis Group, LLC

Place, publisher, year, edition, pages
New York, NY: Taylor & Francis, 2017. Vol. 33, no 8, p. 664-676
Keywords [en]
evaluation, digital peer support, children, participation, case study, strategy
National Category
Human Computer Interaction
Identifiers
URN: urn:nbn:se:hh:diva-34700DOI: 10.1080/10447318.2017.1278892ISI: 000407146200006Scopus ID: 2-s2.0-85011298615OAI: oai:DiVA.org:hh-34700DiVA, id: diva2:1130627
Funder
Swedish Research CouncilSwedish Research Council FormasForte, Swedish Research Council for Health, Working Life and WelfareSwedish Childhood Cancer FoundationKnowledge FoundationVINNOVAAvailable from: 2017-08-10 Created: 2017-08-10 Last updated: 2018-03-23Bibliographically 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, SusanneSvedberg, PetraBergquist, MagnusNygren, Jens M.

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