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Ethics of User Involvement in Sensitive Design Situations
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)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 [en]
ethics, participatory design, user involvement, design research, children, schizophrenia, cancer, sensitive, vulnerable, design, participation, principles, digital peer support
National Category
Information Systems
Identifiers
URN: urn:nbn:se:hh:diva-36396ISBN: 978-91-87045-92-9 (print)ISBN: 978-91-87045-93-6 (electronic)OAI: oai:DiVA.org:hh-36396DiVA, id: diva2:1188617
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
List of papers
1. Ethics in Health Promoting PD: Designing Digital Peer Support with Children Cured from Cancer
Open this publication in new window or tab >>Ethics in Health Promoting PD: Designing Digital Peer Support with Children Cured from Cancer
2014 (English)In: PDC 2014: Reflecting connectedness: Proceedings of the 13th Participatory Design Conference: Volume 1: Research Papers / [ed] Ole Sejer Iversen, Heike Winschiers-Theophilus, Vincenzo D'Andrea, Andrew Clement, Andrea Botero, Keld Bødker, New York, NY: ACM Press, 2014, p. 91-100Conference paper, Published paper (Refereed)
Abstract [en]

Innovative design targets new user groups and application areas. One example is health promoting digital services. In such design contexts it is essential to take social and ethical challenges into consideration. In this paper we report from an on-going design research project aimed at designing digital peer support (DPS) for children cured from cancer. Peer support can meet the children’s imperative need for social support. However, the design context is sensitive and gives rise to ethical challenges and considerations. We illustrate how participatory design (PD) activities can be designed to handle ethical challenges when designing for and with children. We present lessons learned, including using familiar activities, using personas and including healthy children when possible. Further, we reflect on the need to proactively design an ethical perspective into the entire design process, introducing the concept Ethics in Design. Copyright 2014 ACM.

Place, publisher, year, edition, pages
New York, NY: ACM Press, 2014
Series
PDC, ISSN 2150-5896
Keywords
Participatory design, design activities, digital peer support, children, ethics, ethics in design, health promoting
National Category
Information Systems Information Systems, Social aspects
Identifiers
urn:nbn:se:hh:diva-27129 (URN)10.1145/2661435.2661449 (DOI)2-s2.0-85011695354 (Scopus ID)978-1-4503-2256-0 (ISBN)
Conference
13th Participatory Design Conference (PDC), Windhoek, Namibia, October 6-10, 2014
Projects
CHIPS
Funder
Swedish Research CouncilSwedish Research Council FormasKnowledge FoundationVINNOVA
Note

Funding, additional: Swedish Childhood Cancer Society

Available from: 2014-11-26 Created: 2014-11-26 Last updated: 2018-03-22Bibliographically approved
2. Evaluating Digital Peer Support for Children Cured from Cancer
Open this publication in new window or tab >>Evaluating Digital Peer Support for Children Cured from Cancer
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
Keywords
evaluation, digital peer support, children, participation, case study, strategy
National Category
Human Computer Interaction
Identifiers
urn:nbn:se:hh:diva-34700 (URN)10.1080/10447318.2017.1278892 (DOI)000407146200006 ()2-s2.0-85011298615 (Scopus ID)
Funder
Swedish Research CouncilSwedish Research Council FormasForte, Swedish Research Council for Health, Working Life and WelfareSwedish Childhood Cancer FoundationKnowledge FoundationVINNOVA
Available from: 2017-08-10 Created: 2017-08-10 Last updated: 2018-03-23Bibliographically approved
3. Unlocking design potential: Design with people diagnosed with schizophrenia
Open this publication in new window or tab >>Unlocking design potential: Design with people diagnosed with schizophrenia
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
Case study, design, participation, schizophrenia, strategy
National Category
Interaction Technologies Other Medical Sciences not elsewhere specified
Identifiers
urn:nbn:se:hh:diva-34901 (URN)10.1080/17538157.2017.1363762 (DOI)28853962 (PubMedID)2-s2.0-85028544974 (Scopus ID)
Available from: 2017-09-08 Created: 2017-09-08 Last updated: 2018-03-08Bibliographically approved

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