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DESIGNING MOBILE LEARNING FOR CHILDREN AND TEENAGERS LIVING

WITH DIABETES

BYMARIE GLASEMANN

DISSERTATION SUBMITTED 2016

DESIGNING MOBILE LEARNING FOR CHILDREN AND TEENAGERS LIVING

WITH DIABETES

A CONCEPTUALISATION THROUGH DESIGN PARTICIPATION

PART I

by

Marie Glasemann

Dissertation submitted 2016

Thesis submitted: July 7, 2016

PhD supervisor: Prof. mso Anne Marie Kanstrup, Aalborg University Assistant PhD supervisor: Prof. mso Thomas Ryberg, Aalborg University

PhD committee: Prof. Ann Bygholm, Aalborg University, DK Prof. Finn Kensing, University of Copenhagen, DK Senior Lecturer Dr. Mark Dunlop, University of Strathclyde, UK

PhD Series: Faculty of Humanities, Aalborg University

ISSN (online): 2246-123XISBN (online): 978-87-7112-752-2

Published by: Aalborg University Press Skjernvej 4A, 2nd floor DK – 9220 Aalborg Ø Phone: +45 99407140 [email protected] forlag.aau.dk

© Copyright by author

Printed in Denmark by Rosendahls, 2016

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CV

Marie Glasemann received her degree in Computer Science (Dipl.-Inf.) with specialisation in media informatics and e-learning at the University of Luebeck, Germany, in 2005. She worked as research assistant at the Institute for Multimedia and Interactive Systems (IMIS), University of Luebeck. She was involved in the KiMM (Kids in Media and Motion) initiative, a research and transfer project which promoted action-based and body-centred forms of instruction for students and teachers in the classroom. In 2007 she moved to Aalborg, Denmark, and became affiliated with the e-Learning Lab (eLL) – Center for User Driven Innovation, Learning and Design at Aalborg University (AAU).

In 2008 she started as a PhD fellow at the Department of Communication and Psychology at Aalborg University. Her PhD project was part of the maXi project, an initiative to develop concepts for IT services for everyday living in cooperation with people living with the chronic disease of diabetes.

In 2011 Marie started a position as an e-learning consultant at the e-Learning Cooperative Unit (ELSA) at AAU (since 2013 a part of the IT Services at AAU). In 2014 Marie moved back to Germany and became affiliated as an e-learning consultant and research assistant at the University of Potsdam. Since 2015 she has been project manager at the IT unit at the University of Applied Sciences, Potsdam.

Her research interests are in the areas of Human-Computer Interaction, Learning Design, Participatory Design and Health Information Technology research.

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ENGLISH SUMMARY

In this dissertation, I conceptualise the design of mobile learning for children and teenagers living with type-1 diabetes. The investigation was conducted as an iterative and participatory design-based process founded on the assumption that insights and implications for design and contextual understanding arise through reflective design and by involving the target group. The research examined design participation with a focus on the involvement of youths and an understanding of the youths’ perceptions on using mobile technology for learning about diabetes.

Central to the research was a concrete design case divided into four studies, where a summer camp for youths with diabetes functioned as site for creating a hybrid “third space” for investigating and facilitating design participation. The particularities of designing with and for young people living with diabetes were identified, and design insights unfolded through the design trajectory. Based on my empirical research, which focused specifically on the design of mobile games for youths aged 10 to 16 years addressing the carbohydrate counting problem, three central themes emerged: emotion, ecology, and evolution.

The research and findings presented contribute to design methodology and design practices within the fields of Participatory Design and Health Information Technology research. In particular, the design trajectory and the MYLD framework are interdisciplinary research contributions that emphasise the need for a holistic perspective when designing at the intersection of mobile technology, youth, learning, and diabetes; considering the themes of emotions, evolution, and ecology; with a focus on learning about diabetes.

DIABETES IS AN ART, NOT A SCIENCE. YOU MUST MASTER THE CONTROL BY SKILLS AND NOT BY KNOWLEDGE ALONE.1

1 Quote from an active user on www.diabetesforums.com

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DANSK RESUME

I denne afhandling undersøger og konceptualiserer jeg design af mobil læring for børn og teenagere som lever med den kroniske sygdom type 1-diabetes. Studiet er udført som en iterativ og deltagende design process og baseret på antagelsen om, at indsigt, betydninger for design og kontekstuelle forståelser opstår gennem reflekterende design og ved at inddrage målgruppen. Studiet undersøgte design deltagelse med fokus på inddragelse af unge og fokus på at forstå de unges opfattelse af brug af mobil teknologi til at lære om diabetes.

Omdrejningspunktet for forskningsprojektet er en design case opdelt i fire studier. En sommerlejr for unge med diabetes fungerede som et hybridt ’tredje rum’ til at undersøge og facilitere design deltagelse. Kendetegn ved at designe med og for unge, der lever med diabetes, blev identificeret, og design indsigter blev udfoldet gennem design processens iterationer. Min empiriske forskning, som fokuserede specifikt på design af mobile spil om kulhydrat optælling for unge diabetikere i alderen 10 til 16 år, identificerede tre centrale temaer: følelser, økologi, og evolution. MYLD-modellen (Mobile technology, Youth, Learning, Design) samler de forskellige elementer som er identificeret i design processen og bidrager med en systematisk ramme for fremtidig designforskning i mobile læringsspil for unge der lever med diabetes.

Den præsenterede forskningen og dens resultater bidrager til design metoder og design praksis inden for områderne Participatory Design og Sundheds IT. Især design processen og MYLD-modellen er tværfaglige forskningsbidrag, der understreger behovet for et holistisk perspektiv, når der designes i krydsfeltet mellem mobil teknologi, ungdom, læring og diabetes, med temaerne følelser, evolution og økologi og med fokus på at lære om diabetes.

DIABETES IS AN ART, NOT A SCIENCE. YOU MUST MASTER THE CONTROL BY SKILLS AND NOT BY KNOWLEDGE ALONE.2

2 Citat fra en burger i www.diabetesforums.com

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ACKNOWLEDGEMENTS

Writing a thesis has been a cultural, personal and professional challenge for me. I assumed there would be not much difference in moving from a German to a Danish university. However, having been educated in a technical-oriented field of study in Computer Science, it took time for me to feel integrated and to adopt a different way of thinking and doing research at the Faculty of Humanities in a very liberal working environment. I learned a great deal during this journey, especially that making mistakes is acceptable, that unexpected results are valuable and that reflective thinking along the way is most important. I received support, feedback and help in various ways from many different people. I cannot thank all of them here. However, there are some people I want to mention specifically.

I am very grateful to my main supervisor, Anne Marie Kanstrup, who has been an inspiring and critical coach and who guided me through this project by knowing best when to give me space to follow my own directions as well as when to get me back on track. Thanks to my co-supervisor, Thomas Ryberg, for valuable discussions and feedback within the field of learning, youth, and ICT. I want to thank my supervisors for believing in me and for countering my reoccurring doubts over ever being able finishing the thesis. Thanks to all my colleagues at the e-Learning Lab for feedback on my project in seminars and informal discussions. Especially, thanks goes to my PhD fellows, in particular to Lillian Buus, Heilyn Camacho Nunez, Kristina Rasmussen, and Camilla Petersen.

I am grateful for the generous financial support from the Danish Enterprise and Construction Authority, allowing me to conduct the research. Thanks goes to Lone Dirckinck-Holmfeld, who introduced me to the e-Learning Lab and who pointed me to the innovative and interesting maXi project, which I finally became a part of. Finally, I would like to thank Aalborg University and the Danish government for facilitating a very family-friendly working environment.

I want to say thanks for the support and the hospitality I received from the management and the staff of the diabetes summer camp where I was able to conduct the field studies in three iterations. I extend thanks to the children and their parents, who were my fruitful source of inspiration, study and investigation. I am grateful to Lia Hadley for giving me help in improving my English writings.

Thanks goes to Jan and our two girls, Tira and Lina. I thank my parents and also Markus and Karin for their moral support and for spending their holidays taking care of our kids during our academic work, conferences and field studies. Lastly, lovely thanks to Olaf for encouraging and supporting me in the final spurt of finishing this thesis.

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TABLE OF CONTENTS

Chapter 1. Introduction ......................................................................................... 11 1.1. Background ................................................................................................... 11 1.2. Motivation and focus ..................................................................................... 12 1.3. Development of the research questions ......................................................... 14 1.4. State-of-the-art of the project ........................................................................ 16 1.5. The structure of the dissertation .................................................................... 16 1.6. Presentation of the paper collection .............................................................. 17

1.6.1. Research focus ........................................................................................ 17 1.6.2. Focus on techniques ............................................................................... 18 1.6.3. Focus on design and exploration ............................................................ 18

Chapter 2. Research approach, setting and methods ......................................... 21

2.1. Participatory design ....................................................................................... 21 2.1.1. Participatory design – then and now ...................................................... 21 2.1.2. Arguments for and underlying assumptions within PD ......................... 23 2.1.3. User-centred design ................................................................................ 23 2.1.4. The rationale behind choosing a participatory design approach ............ 24

2.2. Design participation: Involving children and teenagers ................................ 26 2.2.1. Druin’s four roles of children in the design of technology .................... 26 2.2.2. Involvement of children and teenagers living with a disease ................. 27 2.2.3. A mutual but asymmetric relationship ................................................... 27

2.3. Design setting: Research in a diabetes summer camp ................................... 29 2.3.1. The choice of collecting data in a summer camp ................................... 29 2.3.2. What is a diabetes summer camp? ......................................................... 31 2.3.3. A german diabetes summer camp .......................................................... 32 2.3.4. Bridging lab research with research in everyday life ............................. 32

2.4. Design process .............................................................................................. 34 2.4.1. Iterative design ....................................................................................... 34 2.4.2. Three level abstraction of a thoughtful interaction design process ........ 35

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2.4.3. Relating the design process to the three levels of abstraction ................ 36 2.4.4. Iteration 1 – Revising the vision by understanding the context ............. 37 2.4.5. Iteration 2 – Refining the operative image ............................................. 38 2.4.6. Iteration 3 – Challenging the specification ............................................ 39

2.5. Ethical considerations ................................................................................... 39 2.5.1. Terminology ........................................................................................... 39 2.5.2. Informed consent and its challenges ...................................................... 40

2.6. Methodological reflections and conclusions ................................................. 42 2.6.1. Facilitating design participation in a camp ............................................ 42 2.6.2. Facilitating participation through user mock-ups ................................... 43

Chapter 3. Design trajectory and design exploration ......................................... 47

3.1. A too visionary vision ................................................................................... 48 3.2. Study 1 .......................................................................................................... 49

3.2.1. Aim ......................................................................................................... 49 3.2.2. Results – The youths’ vision .................................................................. 49 3.2.3. Conclusion – Understanding emotions .................................................. 51 3.2.4. The challenge of and need for learning about diabetes .......................... 52 3.2.5. Towards an operative image .................................................................. 54

3.3. Study 2a ......................................................................................................... 54 3.3.1. Aim ......................................................................................................... 54 3.3.2. Learning perspective .............................................................................. 55 3.3.3. The prototype “The Dragon Quest Game” ............................................. 55 3.3.4. Data collection ........................................................................................ 56 3.3.5. Results .................................................................................................... 56 3.3.6. Conclusion .............................................................................................. 58

3.4. Study 2b ........................................................................................................ 58 3.4.1. Aim ......................................................................................................... 58 3.4.2. Learning perspective .............................................................................. 59 3.4.3. The prototype “The Food Quiz” – Version 1 ........................................ 59 3.4.4. Data collection ........................................................................................ 60 3.4.5. Results .................................................................................................... 61

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3.4.6. Conclusion – Chocolate covered broccoli .............................................. 63 3.5. Study 3 .......................................................................................................... 65

3.5.1. Aim ......................................................................................................... 65 3.5.2. The prototype “The Food Quiz” – Version 2 ........................................ 66 3.5.3. Data collection ........................................................................................ 67 3.5.4. Results .................................................................................................... 68 3.5.5. Conclusion – Mind the agency ............................................................... 70

3.6. Reflections ..................................................................................................... 71 Chapter 4. Discussion ............................................................................................. 73

4.1. Reflections on perceptions and design insights ............................................. 73 4.1.1. Understanding perceptions in the context of design .............................. 75 4.1.2. Reflecting on design choices .................................................................. 75

4.2. The MYLD framework ................................................................................. 78 4.2.1. Emotion .................................................................................................. 79 4.2.2. Evolution ................................................................................................ 80 4.2.3. Ecology .................................................................................................. 81 4.2.4. An integrated framework for designers .................................................. 81

Chapter 5. Conclusions .......................................................................................... 83

5.1. Research questions ........................................................................................ 83 5.2. Methodological reflections ............................................................................ 86 5.3. State-of-the-art: Relation to current research, design, and practices ............. 87 5.4. Future research .............................................................................................. 88 5.5. Landscape of IT services – Zooming in to learning design .......................... 89 5.6. Concluding remarks ...................................................................................... 91

Literature list .......................................................................................................... 92

Appendices ........................................................................................................... 105

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TABLE OF FIGURES

Figure 1–1: The landscape of IT services ................................................................ 12 Figure 1–2: Overview of papers in this thesis (left), their relation to the different

chapters (centre) and to the research questions (right) ......................... 16 Figure 2–1: Relating design participation to the different activities in the design

process .................................................................................................. 29 Figure 2–2: Data collection in the context of the PhD project and its relations to the

maXi project ......................................................................................... 31 Figure 2–3: Alternating between “diabetes summer camp” and “off-camp”

activities in an iterative design process ................................................ 34 Figure 2–4: The three abstraction levels of the design process ............................... 36 Figure 2–5: Phases of the design process ................................................................. 37 Figure 3–1: Relation of the four studies conducted during three camp iterations ... 47 Figure 3–2: “The dragon quest game” prototype: a) Setting: Placement of tasks and

QR-codes of the mobile game in the camp area b) Screenshot: example of a food estimation challenges with real food objects .......... 56

Figure 3–3: Screenshots from “The Food Quiz” prototype (translated version): a) estimation example, b) feedback on a correct answer, c) calculation example, d) help description ................................................................ 60

Figure 3–4: Structure of “The Food Quiz” prototype (version 2) ............................ 66 Figure 4–1: The MYLD framework ......................................................................... 79 Figure 5–1: The MYLD framework ......................................................................... 85 Figure 5–2: Placement of learning design within the landscape IT services ........... 90

Table 4–1: Levels of abstraction by Löwgren and Stolterman (2004) in relation to the youths’ perceptions on design, and design insights in the design process .................................................................................................. 74

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CHAPTER 1. INTRODUCTION

In this dissertation, I aim to conceptualise the design of mobile learning for children and teenagers living with type-1 diabetes. The investigation was conducted as an iterative and participatory design-based process founded on the assumption that insights and implications for design and contextual understanding arise through reflective design and by involving the target group (Löwgren & Stolterman, 2004; Simonsen & Robertson, 2012). The intention was to design solutions for a specific situation and to analyse that situation at the intersection of mobile technology, youth, learning, and diabetes. The study had a strong interdisciplinary character and was approached through the lens of human-computer interaction (HCI).

1.1. BACKGROUND

The PhD project was defined in and framed by the maXi project, a Danish research initiative undertaken at Aalborg University from 2007 to 2011. The goal of the maXi project was to develop concepts for IT services for everyday living in cooperation with people living with the chronic disease of diabetes. The vision of the project was to break the boundaries of health support with information technology (IT) by putting people with diabetes and their families at the centre of interest and moving the focus from the disease and hospitals to society, everyday living, and services (Kanstrup, Bertelsen, Glasemann, & Boye, 2008).

The choice to focus on diabetes, known technically as diabetes mellitus, was not made arbitrarily; it is one of the world’s major chronic illnesses. Due to the already high and ever-increasing number of affected people3, diabetes has been labelled an epidemic (International Diabetes Federation, 2009a). While diabetes is particularly problematic in the third world, the increasing occurrence of diabetes also burdens the health care systems of Western nations such as Denmark or Germany (International Diabetes Federation, 2015). Thus, research has been amplified both globally and in individual countries. There are many initiatives to deal with diabetes, such as a focus on prevention, increasing the body of knowledge about the disease, seeking an actual cure, raising awareness and improving life for those with the disease. Especially for that last realm, IT is an important instrument for supporting and improving complex diabetes management. Since poor management can lead to short- and long-term consequences and ultimately affects both patients and health care systems, IT has been championed for its potential to ease

3 2010: 285 million, 2013: 382 million, 2015: 415 million, expected in 2040: 642 million (diabetes prevalence in adults (IDF, 2009, 2013, 2015)), 2015: 0.5 million effected children with type-1 (IDF, 2015)

DESIGNING MOBILE LEARNING FOR CHILDREN AND TEENAGERS LIVING WITH DIABETES

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management and improve overall health, thus saving money and other resources (Bu et al., 2007; Goldschmidt, 2005). With the goal of changing behaviour, ensuring better adherence and offering improved control, the development of self-management technology for data collection and monitoring has increased appreciably over the last decade (Tatara, Årsand, Nilsen, & Hartvigsen, 2009). The maXi project was notable, because it elaborated IT concepts from the perspective of everyday life rather than from the medical perspective (Kanstrup, 2014; Kanstrup, Bjerge, & Kristensen, 2010).

Figure 1–1: The landscape of IT services4

The maXi project, which applied a participatory design approach, resulted in extending the landscape of IT services available for people with diabetes and their families. Three specific directions within the overall dimensions of medical ideals vs. everyday living and individual vs. society were developed: community design, inclusive design and learning design (Kanstrup, Glasemann, et al., 2010). This dissertation contributes to learning design5 by focusing on type-16 diabetes in childhood and early adolescence7.

1.2. MOTIVATION AND FOCUS

I have focused on HCI and young users (i.e. digital media in primary and secondary education) during and after my graduate studies. The maXi project should give me

4 (Kanstrup, Glasemann, et al., 2010) 5 The placement of learning design within this dimension will be discussed later in the thesis. 6 Type-1 diabetes is a special type of diabetes mellitus which requires insulin therapy; it accounts for 5 to 10% of all diagnosed cases and usually develops in childhood (International Diabetes Federation, 2013; Sabaté, 2003). 7 The maXi project focused on families with one or more individuals of any age having type-1 or type-2 diabetes; I narrowed down the target group for this PhD project.


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the opportunity to deepen and extend my knowledge within the HCI field. While the choice of the children and teenager8 age group was obvious to me, I had not previously undertaken research in the health information technology domain. I was very curious about how to shift methodologically and theoretically from designing for comparatively creative uses of technology to designing for a serious health issue. Due to my lack of experience, I had a rather broad entry into the field. During my preliminary studies (i.e. reviewing the literature on diabetes, initial contacts with people living with diabetes), the learning aspect and its relation to diabetes, youth, and IT, especially mobile technology, became increasingly central for my individual project. I selected that focus for the following reasons:

• Learning to self-manage: In childhood diabetes, the term self-management is illusive as such and is better understood as a sharedresponsibility between youths and caregivers (Schilling, Grey, & Knafl,2002), especially during adolescence, when the maturing child takes overincreasing responsibility for dealing with the disease (Karlsson, Arman, &Wikblad, 2008). While the term self-management is frequently usedwithin the medical field, it is viewed as learning by adoptingresponsibility, acquiring and refreshing skills and knowledge, trying toimprove disease management and developing coping strategies andwillingness to follow medically indicated regimes (Garner & Thompson,1978; Saucier & Clark, 1993).

• Education as a cornerstone: While the learning for daily life describedabove generally occurs in informal situations, formal learning isemphasised as an important and continuous part of diabetes therapy.Diabetes self-management education (DSME) has been called a“cornerstone of care for all individuals with diabetes who want to achievesuccessful health-related outcomes” (Mensing et al., 2004), which is astrue for children and teenagers, as it is for anybody else living withdiabetes. Teaching guidelines for this age group do exist and tend to focuson the need for age-appropriate education and for different teaching andlearning techniques (International Diabetes Federation, 2009b,International Diabetes Federation, 2011; Lange, Sassmann, Schütz,Kordonouri, & Danne, 2007).

• Broaden the landscape of IT for diabetes: The range of technologyavailable to today’s youth is nothing less than enormous; it is present atvirtually every waking moment of their lives. In primary and secondaryschools, technology has become integrated into the enhancement of formaland informal learning (Balanskat & Blamire, 2007; Leask, 2001; Lewin,Ellis, Haldane, & McNicol, 2013). For young people living with diabetes,

8 I use the general term “youth” or “young people” and the term “children and teenagers”. The exact age range of the users relevant to this study is described in Chapter 2.


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however, the technological picture is not as bright. The development of self-management technology for monitoring diabetes has been the focus of both research and commercial initiatives (Chomutare, Fernandez-Luque, Arsand, & Hartvigsen, 2011; Tatara et al., 2009). Technology-enhanced and game-based learning approaches in the field of diabetes have been developed (Aoki et al., 2004; Engvall & McCarthy, 1996; Wangberg, Arsand, & Andersson, 2006) but still play a minor role in the landscape of technology for diabetes.

• Learning with mobile technology: The possibilities for using digital technology to promote self-directed and tailored learning are promising, since attitudes towards the illness and adherence are often a challenge for youths living with diabetes (Borus & Laffel, 2010; Schmidt, 2007). Mobile devices enable designers to break out from the classroom context, allowing individual learning integrated into everyday situations (Kukulska-Hulme & Traxler, 2005). The intention was to focus on the design of mobile learning; that is the design of the technology, as well as the design of the learning scenarios. To this end, I wanted to integrate the users’ perspective with the learning perspective to search for design implications that would broaden the landscape of IT for diabetes with a particular focus on learning.

1.3. DEVELOPMENT OF THE RESEARCH QUESTIONS

When I started the project, I aimed at contributing to design research with a concrete design focus on learning at the intersection of youth and mobile technology. While it was clear that it was not the goal to develop a finished product, the vision was still to end up with a design of a rather mature status aiming to show improved self-management practices of youths with diabetes. This motivation was driven by a) my education as computer scientist, b) the fact that there have not been many examples available for the target group in everyday life supporting their learning about the disease9 and c) the perceived notion I got through the diabetes research literature, in particular the medical field, that interventions (with or without technology) should aim at a significantly measurable impact or change in the “patient”, often with a focus on quantitative data and controlled studies (Boukhors et al., 2003; Nordfeldt, Johansson, Carlsson, & Hammersjö, 2005).

However, being new in the diabetes domain, I noticed the complexity and the challenges in finishing the project with a design being more than a prototype. In

9 In a preliminary research, a lack of digital educational tools was identified based on market analysis as well as on feedback from people living with diabetes (Danish cohort in the maXi project).


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contrast, I saw the possibility the HCI lens gave me to contribute to the field. I understood increasingly more the power of considering design artefacts as communication tools allowing children and teenagers to articulate their views on design. While this should result in implications for concrete design (micro level), I also saw in the richness of the data the potential to study and conceptualise the design for mobile technology, youth, learning and diabetes on a more general level (macro level). The latter arose through the fact that there are only a few examples and best practices in regard to how to approach design and what to consider when designing technology for youths living with diabetes and focusing on learning. This applies in particular when aiming at incorporating the viewpoint of the children and teenagers into the design. My hypothesis was that a conceptualisation for the intersection of youth, mobile technology, and diabetes from a HCI perspective could contribute to an understanding of the interdisciplinary field and the target group and could serve as a basis for future design.

The motivation behind the project based on the previous elaboration can be turned into three research questions:

• RQ1: How can we facilitate design participation for young people livingwith the chronic disease of diabetes in the design of mobile learning?

• RQ2: How do young people living with diabetes perceive mobilelearning?

• RQ3: How can we conceptualise the design of mobile learning forchildren and teenagers living with diabetes (type-1)?

Addressing the first question was based on the premise that the close and intense user involvement of the target group will benefit the design. My assumption was that insights and implications for design as well as an understanding of the context arise through reflective design and through involving the target group. Hereby, a participatory design approach was seen as most appropriate. It was selected because its methods and techniques specifically focus on user perspectives, design exploration, and design reflections. There are various methods for how to design with and for children and teenagers. These methods can be applied when designing within the diabetes context. Nevertheless, I assumed particularities which make it special to design for the diabetes context and thus important to be aware of. Therefore, addressing research question 1 should contribute to the methods and techniques for this particular field.

The second question focused on the users’ perception of mobile learning. It contributed to the impact of mobile learning not from a clinical viewpoint, but rather from a very personal view addressing the children’s expectations and experiences. The question was approached empirically and the analysis was based on results from the iterative participatory design process.


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Finally, the third question intended to contribute with a conceptual perspective on the design of mobile learning for children and teenagers with diabetes. The aim was to conceptualise the interplay and contradictions between the core elements addressed in this research: youth, diabetes, mobile technology and learning. Hereby, the concrete design case and the user perspective contributed to an overall framework useful for interaction designers working in the field of mobile learning for children and teenagers with diabetes.

1.4. STATE-OF-THE-ART OF THE PROJECT

The PhD project began in 2008. All data collection, most of the analysis, and the publishing of four out of five papers were finished in 2011. Due to a break from research, it took me a further period of time to finalise the thesis. Most references originate from the period between 2008 and 2011, since the thesis reflects state-of-the-art research for that period. Though, I have added or updated references where appropriate without rewriting the whole summary. Nevertheless, I have tried to follow up on current research. Therefore, in the concluding chapter I related my findings to new approaches, developments and results from recent years’ research within the field, and I reflected on the relevance of my findings for future research.

1.5. THE STRUCTURE OF THE DISSERTATION

I chose a cumulative format for this dissertation as a way of presenting my study, its approach and its findings. Thus, the thesis is formed by a collection of papers (Part II) and a summative study description (Part I). The latter introduces the research and connects the papers, which focused on specific issues. Figure 1–21–2 illustrates how the papers are related to the different chapters of the first part of the thesis.

Figure 1–2: Overview of papers in this thesis (left), their relation to the different chapters (centre) and to the research questions (right)


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The Introduction chapter presents the study focus and the research questions. Chapter 2 deals with the methodological approach of the thesis. Here, I undertake a position towards participatory design and design participation (the involvement of the users). Furthermore, the research setting and process are presented and set in relation to Löwgren’s and Stolterman’s three levels of abstraction of a thoughtful interaction design process (2004). Finally, in Chapter 2, the first research question is addressed primarily by summarising Paper II’s results (the technique of user mock-ups) as well as by concluding on reflections on diabetes summer camp as a site for design research. In Chapter 3, I summarise the results of papers II to V to address research question 2. In Chapter 4, I introduce the MYLD framework, which is a conceptualisation based on the empirical and analytic findings from the participatory design of mobile learning with children and teenagers. Finally, in Chapter 5 I make concluding remarks on the research and its contribution, and I state directions for further research. Part II of the thesis encompasses the paper collection, which is introduced briefly in the following.

1.6. PRESENTATION OF THE PAPER COLLECTION

This section introduces five papers framing the dissertation. The papers can be found in Part II of the dissertation. The collection encompasses four peer-reviewed full academic papers and one technical report published within the fields of Interaction and Participatory Design, Mobile Learning, and Health Information Technology research. Papers I, III to IV went through a full blind peer-review process and have been accepted to and presented at international conferences. Paper II, also blind peer-reviewed, is a journal contribution based on two additional conference papers not part of this collection. Papers I to IV are written in cooperation with one or both of my two supervisors, whereas I made the major contribution to all papers. Co-authored statements are enclosed in Part II of the dissertation. Paper V is a technical report published at the Danish Centre for Health Informatics (DaCHI). Selected issues of all five papers will be elaborated more deeply in the following chapters.

The five papers address different issues within the research project and can be categorised into the following areas: a) research focus, b) focus on techniques, c) focus on design.

1.6.1. RESEARCH FOCUS

Paper I: “IT for Learning Diabetes” describes a position towards a focus on learning design for diabetes by approaching teaching and learning issues with digital media. This emphasis, which is grounded on literature studies and empirical data, complements the existing dominating focus on self-management tools for tracking and monitoring in diabetes care. As a result of this paper, the learning


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aspect became a central theme for the studies of designing within the areas of youth, diabetes, and mobile technologies. The paper was presented at the biannual conference on Information Technology in Health Care: Socio-technical Approaches, ITHC 2010, and was finally published in the IOS Press series “Studies in Health Technology and Informatics”.

Glasemann, M., & Kanstrup, A. M. (2010a). IT for learning diabetes. In C. Nøhr & J. Aarts (Eds.), Information Technology in Health Care: Socio-Technical Approaches 2010. From Safe Systems to Patient Safety, vol. 157 (pp. 154-159). Studies in Health Technology and Informatics, Amsterdam, The Netherlands: IOS Press BV.

doi: 10.3233/978-1-60750-569-3-154

1.6.2. FOCUS ON TECHNIQUES

Paper II: “Emotions on diabetes: A design case of user mock-ups by young people living with diabetes” presents the technique of user-mock-ups, which was used and applied in the early phase of the project to engage and involve children and teenagers with diabetes in the design process. The paper shows how the results of those mock-ups can be understood; by conceptualising the users’ visions and emotional expressions and it informs future design. The paper was originally based on a short paper and was then extended to a full paper. The short paper was accepted for and presented at the Danish HCI symposium (Glasemann & Kanstrup, 2008). It was later transformed into a full paper presented at the Emotion and Design Conference 2010 (Glasemann & Kanstrup, 2010). The paper was finally revised and published as a design research case paper in the special issue “Design and Emotion” of the CoDesign Journal in September 2011.

Glasemann, M., & Kanstrup, A. M. (2011). Emotions on diabetes: A design case of user mock-ups by young people living with diabetes. CoDesign, 7(2), 123–130.

doi: 10.1080/15710882.2011.609894

1.6.3. FOCUS ON DESIGN AND EXPLORATION

Paper III: “Design and Exploration of a Mobile Game Scenario in a Diabetic Youth Camp” elaborates on a design study, which I implemented and explored in the research project. The paper presents the learning design, which focuses rather


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on the learning situation, a mixed-reality scenario, than on the design of a system. The design is based on an active, collaborative, mobile, problem-based view of learning to complement existing formal teacher-centred lessons for diabetes. The prototype (“The Dragon Quest Game”) was tested with a small group of users at a diabetes summer camp to explore how this novel approach to learning appeals to youths with diabetes and how it can inspire future designs. This paper was presented at the IADIS Mobile Learning Conference 2010 and is published in the conference proceedings.

Glasemann, M., Kanstrup, A. M., & Ryberg, T. (2010). Design and exploration of a mobile game scenario in a diabetic youth camp. Proceedings of the IADIS International Conference Mobile Learning 2010 (pp. 132–140). Porto, Portugal.

ISBN: 978-972-8924-99-7

Paper IV: “Making chocolate-covered broccoli: Designing a mobile learning game about food for young people with diabetes” presents the second design (“The Food Quiz”) implemented and explored in my study. This paper elaborates on a design focusing on the acquisition of very specific diabetes skills – specifically, counting carbohydrates – and thus presents a contrasting view on learning to that in Paper III. In the paper, the design as well as the exploration of the first iteration isexplained by pointing out the ambition and challenge of designing learning (the broccoli) in an engaging way (the chocolate). The paper was presented at the biannual conference for Designing Interactive Systems 2010 held by ACM and is published in the conference proceedings.

Glasemann, M., Kanstrup, A. M., & Ryberg, T. (2010). Making chocolate-covered broccoli: Designing a mobile learning game about food for young people with diabetes. Proceedings of the 8th conference on Designing interactive systems.

ISBN 978-1-4503-0103-9

Paper V (technical report): “Evaluating carbohydrate-counting practices of youths with type-1 diabetes and their perceptions of a mobile learning game” presents the results of the second iteration of testing the prototype (“The Food Quiz”) in a diabetes summer camp. The paper builds on the results of Paper IV. Furthermore, the paper reports on the carbohydrate counting practices, skills and attitudes of youths with type-1 diabetes. The study is based on quantitative data collected before and after the prototype test, specifically, questionnaires and an


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assessment test of carbohydrate counting. Additionally, results from qualitative data – probes, observations and informal conversation techniques – accompany the findings. The paper was published as technical report at the Danish Centre for Health Informatics (DaCHI).

Glasemann, M. (2016). Evaluating carbohydrate-counting practices of youth with type-1 diabetes and their perceptions of a mobile learning game. DaCHI (Danish Centre for Health Informatics) Technical Report no. 16-2.

ISSN 1397 –9507, available on www.dachi.dk

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CHAPTER 2. RESEARCH APPROACH, SETTING AND METHODS

In this chapter, I present the research design of my project. After introducing participatory design and other approaches of user involvement and their underlying assumptions, I elaborate on how my study is in line with and contributes to the field of participatory design. Furthermore, I describe the project’s view on user involvement, its setting and its design process. The latter is related to Löwgren’s and Stolterman’s three abstraction levels of a thoughtful interaction design process (2004). I continue this chapter with reflections on ethical considerations. Finally, I conclude in relation to the methods of the study and address my first research question (RQ1). Hereby, I summerise on design participation in the camp and on Paper II’s results (the technique of user mock-ups).

2.1. PARTICIPATORY DESIGN

I conducted my research as a design-based process. My design approach was based on participatory design, regarding active user involvement as valuable and important in the design of Information and Communication Technology (ICT). Since I wanted to design not only for, but also with children and teenagers living with the chronic disease of diabetes, I considered them as knowledgeable participants contributing to the design (cf. Greenbaum & Kyng, 1991). The involvement of the young people was therefore a “how” question (vs. a “why” question). Hereby, dialogue and learning were central methodological challenges to drive the design process iteratively towards design.

2.1.1. PARTICIPATORY DESIGN – THEN AND NOW

Participatory design (PD) is an approach to design which sets its focus on active and meaningful end-user participation in the design process to ensure that the result meets user needs (Mathiassen, 1998; Winograd, 1996). This approach, previously named “cooperative design”, has its roots in Scandinavia in the 70s and 80s. Projects at that time aimed at the design of computer systems for workplaces by involving trade union representatives and thus contrasting traditional ways of designing systems (Kuhn, 1996). Instead of trying to fit users into the development process, the PD approach aimed rather on facilitating creative ways of approaching design by enabling users and designers to learn and design together (Greenbaum & Kyng, 1991). Related to this, the term “industrial democracy”, democracy in the workplace, was emphasised to assure that workers are enabled to shape and frame new systems and their use and thus be involved in decisions changing the workplaces (Ehn, 1993; Kuhn, 1996). Therefore, the design of new systems should


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consider the skills of workers and the development of competences rather than primarily focus on increasing the efficacy of labour (Kuhn, 1996). The cooperative approach focuses on mutual learning in contrast to the view of expert rules in a traditional approach to design (Greenbaum & Kyng, 1991). Thus, the users are seen as valued participants (vs. objects) throughout the whole design process, which is described by Bannon as a shift “from human factors to human actors” (1991, p. 27).

Henceforth, the PD community has continuously developed and opened up in various ways (Halskov & Hansen, 2015):

• PD has attracted increasingly more researchers and practitionersworldwide and therefore is applied nowadays in many countries outsideScandinavia (Simonsen & Robertson, 2012).

• While a strong focus in PD is still the design of IT for workplaces andbusinesses, also called participatory IT design (K. Bødker, Kensing, &Simonsen, 2004), the approach is nowadays used to design for verydifferent domains, such as for health care in hospitals, in peoples’ home, ine-governance, in e-learning, in e-democracy, in new media, in communitynetworks and in planning. IT is a focus in many projects. However, the PDcommunity, with its emphasis on methods and techniques to investigateuser needs, considers design nowadays as a general term, also includingnon-digital solutions, services and artefacts, such as for communitydevelopment, urban planning and textile design. In this relation, the typeof people involved in design are obviously no longer only workers,practitioners and union representatives but may be of any type, such aschildren, elderly people, families, learners or citizens.

• The extension in terms of space, domains and people led to a more liberalview on how to involve users in the design process (Sanders & Stappers,2008). The community itself describes PD as “a diverse collection ofprinciples and practices aimed at making technologies, tools,environments, businesses, and social institutions more responsive tohuman needs” (Simonsen & Robertson, 2012)

While multiple theories and paradigms exist, PD characterises “a pervasive concern for the knowledges, voices, and/or rights of end-users” in which a hybrid experience with constructive discussion, dialogue, negotiation, and mutual learning is important (Muller, 2007, p. 3). The hybrid realm is a “third space” a “design collaboratorium”, a “meeting ground” to overlap the domains of designers and end-users (S. Bødker & Buur, 2002; Muller, 2007). Its intent is not to emphasise the boundaries between the perspectives nor to remove distances entirely but to support the different voices, to push forward ideas and to create new perspectives (Muller, 2007). For the creation of the third space, specific PD techniques, methods, and practices are proposed, such as workshops, prototyping and stories. Muller divided them into the categories spaces and places, narrative structures, games, and


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constructions. The third space is meant to be a process, although site selection is also important (Brandt & Grunnet, 2000; Druin, 2005). The design space becomes movable when different sites are chosen in a design project (Pedersen & Buur, 2000). But also the Living Lab concept and the Internet in Distributed Participatory Design emerge as new sites for creating a hybrid design space (Farshchian & Divitini, 1999; Kanstrup, Bjerge, et al., 2010).

2.1.2. ARGUMENTS FOR AND UNDERLYING ASSUMPTIONS WITHIN PD

While I gave a brief overview of PD in the previous section, I elaborate why PD is a warrantable approach in design research in the following. Greenbaum highlights three perspectives on PD, based on the Scandinavian tradition and workplace design but argues for cross-cultural adaptability (1993). The first perspective refers to the pragmatic view to improve design results. It is argued that computer systems have to better suit people’s practices, since problems in use often are caused by poor or inadequate requirement specification. In contrast to traditional design approaches, PD techniques reduce the risk of errors occurring by involving end users early in the design process. Participation offers the opportunity to design systems with increased quality and productivity.

The second perspective is based on theory arguing that designer and user are faced with the challenge of understanding each other and each other’s experience. Greenbaum underscores this by using the philosophical arguments of Wittgenstein: “If a lion could speak we wouldn’t be able to understand it.”, and Heidegger’s call for “involved acting – not detached reflection” (1993, p. 47). Thus, applying PD implies the view that knowledge is created through interaction among people, practices, and artefacts (Spinuzzi, 2005). For example, prototyping and hands-on experience in realistic settings are used effectively to overcome barriers. This perspective is in line with the “third space” concept presented in the previous section and in Muller (2007).

As a third perspective, Greenbaum elaborates on the political perspective as an argument for design. It originated out of the view of democracy prevalent in Scandinavia. This viewpoint encourages the belief that people should be actively included in shaping which practices are best used. PD offers techniques to do this and has been expanded to domains other than those work-related.

2.1.3. USER-CENTRED DESIGN

Although I positioned myself towards the PD approach, I want to discuss another approach here. User involvement can have different names and terms within the HCI community, such as participatory, cooperative, user-oriented, user-involved, user-centred, and human-centred. The boundaries between these are often difficult


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to draw. In her review, Kujala divides user involvement into the four approaches – participatory design, user-centred design, contextual design, and ethnography – by pointing out the emphasis and the used methods for each (2003). There, user-centred design (UCD) is described as having a focus on usability, where users are providing information and being commentators in taking part in user interviews or prototype methods. In fact, UCD derived from usability engineering and has developed and moved from product assurance testing to integrated product design and development (Karat & Karat, 2003).

Meanwhile UCD is increasingly developing into an integrated approach of using a variety of activities to understand the needs of the user and define user requirements as a way to inform design (Vredenburg, Isensee, & Righi, 2001). Considering context is, just as in PD, seen as an important factor in the design process. UCD encourages using different techniques for user involvement and lends context in the selection of which specific techniques are useful for the project; “UCD experts would not approach game design in the same task-oriented way as they would approach an application design in banking” (Karat & Karat, 2003, p. 540). Nevertheless, UCD is considered different to PD. It retains the expert view and never completely loses control in design when actively involving participants. UCD specifies standards and best practices within different focus areas (Karat & Karat, 2003).

2.1.4. THE RATIONALE BEHIND CHOOSING A PARTICIPATORY DESIGN APPROACH

It is challenge to designate a specific approach of user involvement to a project, because the boundaries of the different approaches have an overlap in the literature. For example, ethnography is used in participatory design projects (Ehn, 1993), whereas Sanders et al. (2008) related ethnography to a more user-centred design, and Kujala defines it as a separate approach (2003). Thus, there might be different perceptions in assigning my research project to either UCD or to PD.

I chose to relate my study to the PD approach. Instead of arguing on the name, I want to describe how to relate to the users, how to involve them in the design process and how to consider design in this research project. I do so by elaborating on my general perspectives in the following.

2.1.4.1. Creating a relationship

Sanders et al. (2008) contrast the role of users, researchers and designers in UCD and in co-design in a caricature by presenting the user as passive object of study in UCD and by outlining the active role of a user in the co-design process together with researcher and designer. Based on the elaboration in the previous sections this is supposed to be a polarisation showing the two extremes of working with users.


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In reality, my research project considered users somewhere on the continuum of users being objects for design and of users being partners in design. I did not consider participants involved in the project as objects, even when also conducting less active participation such as observations or interviews.

According to the three opposing perspectives from Greenbaum (cf. section 2.1.2 in this chapter), I relate my research to the second perspective, the theoretical perspective. One of the goals in my project was to establish a design language with a group of children and teenagers living with type-1 diabetes. Thus, finding ways of interacting with the participants and enabling them to express their views, – that is, facilitating a third space for understanding and design – was a task for this design project (cf. research question 1 in the Introduction chapter). But this project was about designing for a serious disease, which should consider other stakeholders’ views.

Thus, I aimed at a relationship where I saw myself as a facilitator, as a navigator between different views, with the final design decisions remaining in my hands (cf. mutual but asymmetric relationship in 2.2.3). An iterative approach to design and the ambition to present and understand the youths’ views on design are much closer to the partnership view than to the object view regarding users.

2.1.4.2. Design as a sense-making process

Locating my study within a participatory design approach gave me the opportunity to experiment and explore yet still within a systematic way of doing academic work with different design directions. In my research, I focused in particular on pointing out challenges, dilemmas and conflicts in this rather under-researched domain of designing with and for children and teenagers. An iterative process aimed at defining and redefining design implications with the help of mock-ups and prototyping as well as filtering concepts and design decisions. I concentrated on an early design process where even the “final” designs of my projects were still prototypes manifesting a specific path and focus in the design process.

I did not position myself as an expert who claims to know everything. The participants, especially the children and teenagers, were considered knowledgeable and valuable. They shared the endeavour in exploring the various possibilities and challenges for design. Thus, I adopted a learner role, similar to the way Schön describes one attribute of a reflective practitioner: “I am presumed to know, but I am not the only one in the situation to have relevant and important knowledge. My uncertainties may be a source of learning for me and them [the involved participants]” (1984, p. 300).

In contrast to a more product-oriented and linear path where the end result is in focus, I opened up the space for alternatives and design reflections. It was


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occasionally possible for the participants to move outside the design scope. This resulted in recognising the challenges of integrating everyone’s perspectives.

2.2. DESIGN PARTICIPATION: INVOLVING CHILDREN AND TEENAGERS

Thus far I have described and positioned myself towards the participatory design approach in general. In the following, I elaborate on the participants I involved in my research and their role and influence regarding design. I present and discuss the existing methodologies within the field of design for children and health. Based on this, I draw conclusions for my study.

2.2.1. DRUIN’S FOUR ROLES OF CHILDREN IN THE DESIGN OF TECHNOLOGY

Up until 20 years ago, only a few studies had considered and explored children’s active involvement in the development of new technology. Druin was one of the key researchers who pioneered the view of involving children12 directly and early in the design process with several research projects (1998; 1999; 1997). Based on her work and related work, she proposed a four role model in how children can be seen and can contribute to the design process: as users, as testers, as informants and as design partners (Druin, 2002).

According to Druin, the role of a user entails that children are using existing technology. They are observed or videotaped or tested before and after on their skills. Gained findings are used to promote future technology or learning scenarios development.

In the role of tester, children test and comment upon digital prototypes. Their contributions leads to the redesign and further development of the prototypes. In contrast, in the role of informants, the children are involved even before a first digital prototype is developed. For example the children are observed using existing technology or while making comments on sketches. Additionally, their involvement in later phases of the design process is possible.

In the role of design partner, children are considered equal stakeholders, but only in ways appropriate for the children and the process. The partner role encompasses activities as user, tester, and informant. One difference of this role is the time and frequency the children are involved in the design process. Druin states that the partnership relation can only arise over a longer time span with a close cooperation

12Here the term “children” also includes teenagers as an age group, since the field of Interaction Design and Children is open to the diversity of all non-adult people.


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of at least one year of weekly sessions to negotiate new power structures and allow the children to adopt their role (2002).

The methods used in the role of informant, and in particular of design partner, mirror a participatory design approach. They refer to the notion of “designing with children” as a complement to “designing for children” within the field of interaction design for children. In contrast to Druin’s position, Scaife and Rogers claimed that the involvement of children is limited to the informant role when designing educational software (1998).

2.2.2. INVOLVEMENT OF CHILDREN AND TEENAGERS LIVING WITH A DISEASE

While involving youths in design processes requires special considerations in regard to ethics and techniques, the involvement of young people having a disease additionally requires careful planning and conduction. Different research projects have done so in various ways.

A project with the goal to design a child-friendly system for reporting symptoms of children having cancer used participatory design sessions by involving healthy children and limited the involvement of children with cancer to interviews (Ruland, Starren, & Vatne, 2008). While this process might not fit to the ideal of involving end users in a cooperative design process, it can still be seen as real and valuable participatory design, since the designers acknowledged the context of design and chose and adapted meaningful methods and techniques to facilitate usable design.

Over recent years, different diabetes projects have involved prospective users in the design process, though the target group were often adults (Arsand, Tufano, Ralston, & Hjortdahl, 2008; Biswas et al., 2008; Mamykina, Mynatt, & Kaufman, 2006; Nijland, van Gemert-Pijnen, Kelders, Brandenburg, & Seydel, 2011). A participatory design project focused on the development of a text message system to send health-related diabetes information to the mobiles of young people with diabetes by involving practitioners (Waller, Franklin, Pagliari, & Greene, 2006). Other projects also involved the young people themselves in the design process of specific technology: for example, a diabetes simulator for education (Nordfeldt, Hanberger, Malm, & Ludvigsson, 2007), a mobile phone with integrated blood glucose functionality (Carroll, Marrero, & Downs, 2007; Carroll, Marrero, & Swenson, 2007), and an Internet coping platform (Whittemore, Grey, Lindemann, Ambrosino, & Jaser, 2010).

2.2.3. A MUTUAL BUT ASYMMETRIC RELATIONSHIP

In the project, the main stakeholders were children and teenagers living with diabetes. Basing design implications only on the children’s perspective might be


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critical, since diabetes is a very serious disease. Furthermore, managing the disease does not happen in isolation and intuitively, since medical norms as well as parents and professionals are framing the life with diabetes. This had to be considered in the design of technology, even when focusing on a user view instead of a medical view in design. Therefore, diabetes practitioners and parents were also involved in the design process. Still, I emphasise that children are not “weak” stakeholders but rather are in focus in my study, by providing them with various activities to articulate their views and cooperate on design.

Therefore, the term “mutual asymmetric partnership”, derived from user-driven innovation projects (Kanstrup & Christiansen, 2009), is a more appropriate term explaining the relationship with the participants I involved in my study. The relationship was mutual, because I wanted to involve the children and teenagers in a way so that they are part of the shared endeavour of exploring the possibilities and challenges of designing mobile learning for youths living with diabetes. Thus, the challenge was to frame a proper space (by choosing artefacts, questions, processes, techniques) for the children and teenagers living with diabetes, enabling them to externalise their thoughts and ideas, and making them understand my intention for design, which, in turn, should help me to continually learn about the domain, understand their practice and finally promote progress in the design process.

Furthermore, asymmetry existed, since a design process is more than a range of shared activities. Even co-creational activities had to be prepared and were followed by a phase where the designer defines the next steps and directions based on the analysis of previous data collections.

Iversen describes design as a continuous progression of a design exploration session and design reflection conducted in a spiral model (2005, p. 74). While he argues that children can be part of the reflection process, he emphasises that there is no symmetry between participants and designer. It is the designer’s responsibility to understand use practices, to be open to new ideas instead of holding onto a predetermined goal, and to use this knowledge to further develop their own practices.

In my project, design participation is a continuous alternation between users’ activities, the designer’s activities, and shared activities. This is comparable to Lee’s definition on design participation, which takes place in the abstract space of the expert world (the designer’s), in the concrete space of the people’s world (the participants’), and in particular in the realm of both (2008).


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Figure 2–1: Relating design participation13 to the different activities in the design process

The designer’s activities entailed preparation of design activities or artefacts as well as reflecting on and analysing the data gathered from the participants. The participants, in this case the children and teenagers living with diabetes, created, articulated, and expressed their thoughts by designing their own artefacts or responding to prototypes through use. Concrete design activities were not considered a collaborative process in respect to activities for co-creating artefacts. Rather the overall design process was collaborative towards understanding use practice and design implications. Finally, shared activities took place by discussing, reflecting on and negotiating the design and ideas.

2.3. DESIGN SETTING: RESEARCH IN A DIABETES SUMMER CAMP

This section describes the setting in which I conducted the main part of my data collection: a German summer camp for children and teenagers with type-1 diabetes. I introduce why I chose this site, and I describe the opportunities within and barriers to conducting research at this site.

2.3.1. THE CHOICE OF COLLECTING DATA IN A SUMMER CAMP

My PhD project was connected to the maXi project, which involved Danish families in which one or more members are living with diabetes (see the Introduction chapter of this thesis). Whereas the maXi project focused on a diversity of people with diabetes, I chose to focus on children and teenagers with type-1 diabetes. Initially I was convinced that I could collect my data within the frame of the maXi project’s participants, that is, by focusing on those families

13 (Lee, 2008)


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relevant for my study14. But when I was involved in the project and conducted activities, such as workshops, I faced challenges in regard to continuing the research with this user group.

The first phase of the maXi project entailed the involvement of eight families, including seven children and adolescents living with diabetes (between eight and 18 years). In spring 2008, one day several workshops were organised at the university for all the families but lacked attendance by the children with diabetes. Only one family participated with their three adolescent children. Other families with children either cancelled or took part without their child with diabetes. Nevertheless, I planned and conducted two workshops. One workshop was with the parents and the other one with the children living with diabetes.

The workshop with the parents gave me valuable data. While their view was not unimportant, my ambition was to use them on a peripheral basis and to rather seek rich input from the children and teenagers. This I found to be difficult to obtain during the workshop with the three adolescence (16, 16 and 18 years), who were already very experienced with and very responsible for their disease.

One additional barrier was the language, since Danish is not my mother tongue, and my language skills were not mature enough to cope with dialects and the teenagers’ way of talking. With the help of a student worker I conducted the workshop, but I noticed I that I could not engage enough in the conversation. This was a barrier to the relationship I was seeking and which I found important to gain when designing for this target group.

Reflecting on the results from the workshop, I felt unable to make concrete design suggestions for exploration in the planned first round of the maXi Living Lab. I lacked a “thick description” (Geertz, 1973), which could lead to first design implications. The children involved in the maXi project were wrapped in the family context. While this worked well for the maXi project with the aim to design IT services, it did not work for purpose with the focus on learning. I wanted to gain more insights into the lives of children and teenagers with diabetes from the target group itself and not only from their parents.

14 having a child with type-1 diabetes


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Figure 2–2: Data collection in the context of the PhD project and its relations to the maXi project

These challenges led me to consider the collected data as preliminary and to seek for opportunities to collect data in the German diabetes community (cf. Figure 2–22–2). Thus, a summer camp for children and teenagers with diabetes gave me the opportunity to collect rich data in short period of time.

2.3.2. WHAT IS A DIABETES SUMMER CAMP?

Attending holiday camps is a very important moment for many school children, because they can spend some days without their parents and accompanied by peers. Regular camps often cannot take care of youths with diabetes due to special demands and needs in relation to disease management (Zimmerman et al., 1987). Thus, the diabetes camp concept was introduced to offer chronically ill children the opportunity to be on holiday in a safe environment with specially educated staff.

Nowadays, diabetes camps are conducted in many countries and are often seen as an important component in the therapy of childhood diabetes (Tumini, Anzellotti, & Chiarelli, 2003). One important goal is to make the children more responsible for their disease while meeting and sharing their experiences with peers (Diabetes Care, 2004). Thus, having fun with and learning from each other is an important psychosocial component of a camp stay. But also medical check-ups and adaptations in therapy as well as diabetes lessons are often integrated into the camp intervention (Diabetes Care, 2004).


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A camp intervention is closer to real life than another possible intervention for youths at that age, such as a stay in a hospital including medical support and education. Nevertheless, at the camp the participants have to follow the rules and schedule of the camp, such as having healthy meals at a specified time, monitored disease management, and an obligation to education and leisure activities. Diabetes camps are usually conducted in summer and are therefore referred to in the literature as summer camps or diabetes summer camps (Tumini et al., 2003).

Diabetes summer camps have served as a research environment in the medical field to assess certain attributes (e.g., psychometric) of youths in relation to their diabetes management (Kamps, Roberts, & Varela, 2005; Perwien, Johnson, Dymtrow, & Silverstein, 2000). They have also been used to study the effectiveness of camp interventions (Garcia-Perez, Perestelo-Perez, Serrano-Aguilar, & del Mar Trujillo-Martin, 2010; Karaguzel, Bircan, Erisir, & Bundak, 2005; Wang, Stewart, Tuli, & White, 2008). Educational IT for diabetes, such as games, has been tested as well in camps (Aoki et al., 2004).

2.3.3. A GERMAN DIABETES SUMMER CAMP

The particular summer camp I participated in was established about 25 years ago. It is conducted annually in a rural youth hostel located in the midst of a woodland in the eastern part of Germany. The camp participants sleep in cottages spread over the hostel area. The camp team consists of educated staff with diverse specialities in relation to diabetes care and paediatrics to assure the safety and well-being of the youth throughout the entire stay, including medical doctors, psychologically educated personal, diabetes counsellors, nurses, and dieticians. Often, young adults living with diabetes assist the team. The camp hosts about 100 children and adolescents aged between 6 and 16 years. I attended the camp three summers in a row (from 2008 to 2010), each for the entire period of two weeks.

2.3.4. BRIDGING LAB RESEARCH WITH RESEARCH IN EVERYDAY LIFE

While traditional laboratory research is important and required in different research domains to assure a controlled setting and exclude biases, for this study it was seen as valuable and important to get as close as possible to the field to explore and understand the domain and also to later test and redefine designed concepts, sketches and prototypes in a close-to-real-life context. Within PD, it is considered important to collect data and research in the “wild” in order to understand use practices and to facilitate situated design (Dittrich, Eriksén, & Hansson, 2002; Greenbaum & Kyng, 1991). But instead of entering peoples home and everyday life, I chose to conduct my research in a summer camp. While it can be seen as a critique not to get closer to people’s everyday life, I regarded it as a better choice not to do so. Besides that, I was not trained in this type of research, and I


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considered it too obtrusive to enter young people’s homes and maybe even follow them to school, and in their free time. This could have positioned the child or adolescent as somebody “different” and “special” in their surroundings, which he/she often does not want to be due to stigmatisation.

The camp setting facilitated a safe environment to come in close contact with children and teenagers for a longer period of time. In such a camp, diabetes is in the foreground, whereas in everyday situations, the disease is typically only one factor among several for the young people’s identity and activities (cf. Pullin, 2009). Being in the camp differs from everyday life at home and in school and might reveal different behaviours and actions of the participants. This has to be considered in the research and in the conclusions drawn from the collected data.

Nonetheless, summer camp participation is one special part of the youths’ life. The camp focuses on interaction with practitioners and peers living with diabetes, while outside the camp, family and non-diabetes friends are often in the foreground. Researching in the camp enabled a rich and intense learning experience, where it was possible to observe and to interact with a number of children living with diabetes.

Moreover, in a later design process, going to the field is seen as important when designing for peoples’ everyday lives. While lab tests lack external validity and thus are less likely to reveal rich user experience and feedback associated with the introduced artefact, testing and researching the use of technology in everyday life can be challenging for technical, cooperative and research reasons (Kanstrup, Bjerge, et al., 2010).

The camp functioned as a catalyst to create a cooperative, (semi) controlled setting between the researcher/designer and participants and thus promoted the design process. Efforts to arrange activities were minimal due to my participation in the camp over two weeks each time. Thus, design sessions, feedback on even immature concepts and spontaneously arising informal discussions promoted the design process. It was possible to test technology and observe it in use. In this sense, the camp setting came close to the living lab concept (Almirall & Wareham, 2010), which is seen as an “opportunity to explore ICT in (semi) naturalistic environments in cooperation with selected participants provided by a constructed infrastructure” (Kanstrup, Bjerge, et al., 2010).

But a camp setting also differs from the living lab concept in relation to set up and purpose. The Living Lab, as it was constituted in the maXi project in Skagen (Kanstrup, 2008; Kanstrup, Bjerge, et al., 2010), is framed and defined fully by the researcher. In contrast, in the camp the researcher has to integrate her activities into the overall schedule. I was a guest in a setting with a range of predefined and scheduled activities for the participants, such as check-ups, lessons and leisure


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time. Therefore, negotiating and flexibility were needed to reach one’s own goals under the premise of not disturbing the camp flow.

In summary, the summer camp setting gave me a range of opportunities to access, observe, and interact with the children and teenagers and (some of the) stakeholders and to create a hybrid “third space” (Muller, 2007) as a basis for exploring and designing in the intersection of mobile technology, youth, learning and diabetes.

2.4. DESIGN PROCESS

In the previous sections of this chapter, I described the overall methodological approach for the research design by elaborating on PD and the involvement of the participants as well as the main setting for data collection: a diabetes summer camp. In the following sections, I add to the methodological discussion by presenting the design process, divided into different phases.

2.4.1. ITERATIVE DESIGN

The design research conducted in this study was a learning process which consisted of shared activities with the participants but also of activities solely conducted by me, the designer/researcher. The process of my study took place at two sites, each with different foci: the diabetes summer camp with a focus on exploration and outside the camp (off-camp) with a focus on reflection. Nevertheless, this is a simplified representation. In reality, the activities were interwoven, since reflections also happened during the two-week participations in the camp in interaction with the participants and the design situation, in line with Schön’s notion of “reflection-in-action” (1984). Furthermore, explorations were also conducted outside the camp setting, such as the initial involvement of the Danish participants and design discussions with health care professionals.

Figure 2–3: Alternating between “diabetes summer camp” and “off-camp” activities in an iterative design process

An iterative process with the repeating involvement of users enabled me to explore and refine the analytic insights drawn from previous activities and thus supported learning and reflection as an important element of this study (cf. Figure 2–32–3).


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This project encompassed three iterations of off-camp and diabetes summer camp activities. Each iteration was based on the previous findings and insights and aimed at promoting the design process towards concrete prototypes.

2.4.2. THREE LEVEL ABSTRACTION OF A THOUGHTFUL INTERACTION DESIGN PROCESS

The design process can be related to Löwgren’s and Stolterman’s three levels abstraction of a thoughtful interaction design process (2004). The three levels are termed 1) vision, 2) operative image and 3) specification (Figure 2–42–4).

Vision: The design process starts when the designer is confronted with the design situation for the first time: for example, the background material, a problem statement, a list of requirements or a task description. This triggers an intuitive, immediate reaction on the situation at hand, a vision, which emerges rather unconsciously. Löwgren and Stolterman define a vision not as a solution or a specification but rather as a first organising principle, such as a preliminary idea or a thought on form or function. The emerging vision, and those which follow later, will influence the analysis, studies, ideas, thoughts and proposals throughout the design.

Operative image: The designer externalises the operative image based on the vision(s). Initially, it is a diffuse image captured in sketches, which is further shaped in a dialectical play between the situation at hand, the operative image and the vision. Between these three components tensions arise, which the designer unfolds in a creative process. The operative image is important, since it functions as a bridge between the abstract, elusive vision and the concrete, complex situation. Changing conditions and an increased understanding of the situation might lead to an increased distance from the original vision or to an adaption of the original vision. But the strength of an operative image is the explicit form, which allows manipulation, simulation, visualisation, and communication and thus makes it increasingly more detailed.

Specification: When the operative image is detailed enough, it can result in a specification of the final design. From this a new process starts: the construction in order to produce a concrete and final artefact. Nevertheless, there is no clear division between the design and the construction, since new design situations inevitably arise.

The three levels influence each other continuously, which means that they are occurring neither linearly nor iteratively in a predicted order. Instead, it is considered to be a fully dynamic dialectical process, comparable to the “fuzzy front end” described by (Sanders & Stappers, 2008). The design process is explorative and creative to overcome the complexity and dilemmas, which arise in design


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situations. Nevertheless, the chaotic-seeming process is oriented towards a goal: the specification.

Figure 2–4: The three abstraction levels of the design process 15

The three-levels model focuses on the design process from the design(er’s) perspective. In line with a PD approach, the core element is that design is seen as a conversation with the situation and experimentation where the designer functions as good “listener” or “reader” of the situation. This constitutes thoughtful design practice. This conversation process is a continuous process towards the specification and involves “communication with oneself” referring to the designer’s reflections and design activities as well as “communication to others” (Schön, 1984).

2.4.3. RELATING THE DESIGN PROCESS TO THE THREE LEVELS OF ABSTRACTION

The design process I chose for my project is related the Löwgren’s and Stolterman’s view of thoughtful interaction design based on the three levels of abstraction. First, the two types of conversations (with oneself and with others) can be mapped to the two elements of my iterative design process: off-camp and camp activities. Furthermore, each iteration of my project focused on one of the three levels, whereas more than one level was covered supporting the dialectic rather than the iterative process (cf. previous section). Figure 2–52–5 presents the design iterations and the associated levels of the three abstraction levels. In each, the camp activities were in focus, while the related off-camp phases encompassed those.

15 Löwgren and Stolterman (2004)


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Figure 2–5: Phases of the design process

2.4.4. ITERATION 1 – REVISING THE VISION BY UNDERSTANDING THE CONTEXT

The overall perspective of the first iteration of the design process entailed exploring the context of designing for diabetes, that is, the design situation. When entering the maXi project, the vision of supporting the learning of children and teenagers living with diabetes with ICT was very broad and had to be narrowed down.


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Despite initial readings and literature studies, I did not have previous experience of designing for people with diabetes. Therefore, attending the camp needed to also facilitate my learning to understand the users and their practices by being close to their “everyday” struggle with diabetes.

In addition to participation, dialogue through conversations and tangible methods aimed at bridging the gap between camp and everyday experience, between exploring the practice and their inner thoughts and feelings, and between understanding the practice and implications for design. Visions based on my previous activities and thoughts (off-camp A) were dismissed, while new visions emerged both from me as designer as well as from the participants in user mock-ups (cf. Paper II). In off-camp B, these early ideas or sometimes even concrete solutions expressed in user prototypes were related to other perspectives and analysed, resulting in design implications contextualised in concrete operative images (first sketches of prototypes).

In summary, the first iteration of the project aimed at familiarising myself with the design situation, including the domain, the users, and the design focus. This contextualisation process was intended to lead to first implications for design.

2.4.5. ITERATION 2 – REFINING THE OPERATIVE IMAGE

The core aim of the second iteration of my research was to elaborate on the operative image. While different visions of and first solutions to ideas in the form of operational images had arisen throughout the first iteration, the goal in this iteration was to move forward to a more concrete design with a specific focus. In off-camp B and also in Camp 2, the focus on numeracy, the food problem and learning, which emerged from iteration 1, was explored.

The goal was to build on the operative images with increasingly more details by bringing the artefacts (first paper mock-ups and later digital interactive prototypes) into use and discussion. The artefacts were explored to externalise the visions more concretely. This process resulted in the input of new ideas. In off-camp C, the different perspectives and inputs were examined. This was used to expand the design from the operative image towards one with a concrete specification.

In summary, this iteration functioned as exploration, with a focus on continuously elaborating on and externalising the operative image as a shared task between the participants and me as the designer by using different techniques (cf. papers III and IV). Hereby, the prototypes are considered as materials rather than as products triggering communication to understand the design situation.


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2.4.6. ITERATION 3 – CHALLENGING THE SPECIFICATION

My study followed a formative approach, as I was aware that even the last version of the design would be not a product but a prototype. Nevertheless, the third iteration characterised a summative evaluation. In off-camp C, the analysis led to a concrete specification following the path taken on calculation and food and led to a more advanced version. The purpose shifted from exploring new details for the operative image (Camp 2) to the exploration of the prototype in a longer use situation with a wider range of users (Camp 3) to be able to draw upon the usefulness of the prototype concept. Multiple techniques were used to understand the users’ perceptions and insights on how they learn. Again, openness towards ideas, for example, of new details for an operative image, was not inhibited. In off-camp D, the findings from the camp were analysed and also finally brought in relation to the previous iterations.

In the progressing design process, I approached a more detailed specification stepwise. Nevertheless, the process was a continuous shift between vision, operative images and specification, where the specification became justified even when already being implemented in a prototype (cf. iterative design model). In summary, I tested the specification implemented in a prototype in regard to its usefulness and predefined aim in the final (third) iteration of the design process. This again led to new insights and implications for future design.

2.5. ETHICAL CONSIDERATIONS

Research with and about people living with a disease requires special considerations in relation to data collection, data handling and conducting research in general. In the following section, I reflect on and discuss important ethical issues related to my research, while further considerations can be found in Appendix B.

2.5.1. TERMINOLOGY

The young people living with diabetes should not be considered primarily as “diabetics” and therefore also not named as such. The young people are trying to conduct a normal life like other youths. They have very individual interests besides the shared challenge of mastering the chronic disease of diabetes, which forces them to deal with the consequences several times a day for their whole life.

In my early publications, I used the term “diabetics” for ease of reading, not being aware of the stigmatisation. This use was influenced by my preliminary data


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collection, which involved Danish families within the maXi project16. The word “diabetics” was commonly used in the project, and even the Danish diabetes association uses the term frequently on its website17. Initially, I did not realise that this term is not commonly used in Germany.

While I cannot revise my earlier published papers, I can only emphasise that I consider the participants I involved, and all people with diabetes in general, as persons for whom diabetes is only an aspect of their life and not a determinant of their person. The young people were “extra-ordinary users” with individual desires, taste, and needs, and thus they could not be considered solely as representatives of their age group (cf. Pullin & Newell, 2007).

In this thesis summary, the term “children and teenagers living with diabetes” is used, since my target group focuses on people with diabetes between 10 and 16 years old and thus encompasses preadolescents and adolescents. On some occasions, the terms youth or young people are used for the whole group. In the literature, these terms are sometimes only used for teenagers. Additionally, I use the wording “users” or “participants” to acknowledge them as design participants and not as patients. The participants are each very individually experts in mastering their lives with the disease, and articulating this view has contributed significantly to the project.

2.5.2. INFORMED CONSENT AND ITS CHALLENGES

When involving participants in a scientific study, informed consent is broadly recognised as an important component of ethical conduct. In this respect, the research purpose, collection and use of data as well as the risks and benefits of being involved in the study must be transparent and clear to the participants (Ritchie & Lewis, 2003). When children or teenagers are involved in research, special guidelines should be followed, and, in particular, parental or guardian permission must be obtained in most cases to allow minors to participate (Shaw, Brady, & Davey, 2011). Despite parental consent, children need to be respected as individuals as do their autonomy rights to decide and control their own contribution and their possibility to withdraw from the study at any time (Kuther & Posada, 2004; Kvale & Brinkmann, 2008; Neill, 2005).

In relation to my study, I had to assure that the children and teenagers involved could decide on their own to drop out at any time during the study. The absence of coercion is a basic requirement of the validity of research. Still, the liberty of the 16 During my preliminary studies, I chose to shift to and focus on German participants. The reasons are explained in the methods chapter. 17 http://www.diabetes.dk


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participants to take part, or not, in the activities of the study challenged my process of data gathering. There was a need for tolerance towards sporadic participation, which was required in working with children and adolescents in this setting. This was due to other conflicting elements, which entailed reduced engagement in participating in my activities.

The participants were at the camp to spend their holiday and not to participate in my research. For example, when it was raining, my planned activities were more than welcomed, but good weather conditions or other spontaneous leisure activities made it occasionally more difficult to obtain engagement for scheduled activities. While I could often find enough children to explore or test the technology, obtaining feedback afterwards and finding interview partners was a challenge. I did not make an attempt to persuade them, nor did I “punish” them by excluding them from future prototype testing of the technology. I coped with these challenges and developed, stepwise, a better sense of how to find a middle ground (e.g., making compromises regarding the place for doing interviews, finding another time, explaining the value for me) or when to cancel activities due to a general lack of voluntary attendance to participate caused by unforeseeable factors.

One concrete example which shows the challenge of allowing liberty in participating was an event during the third camp iteration, where the girls’ group was asked to create their own game; two girls agreed to do it, but finally only one remained creating the game, and thus it took her more than an hour. After having finished the game, she showed it to the others girls, and then some of the girls regretted that they did not participate. Another example occurred in the second summer camp, as two teenaged participants decided not to participate in the study at the start of the camp, and thus their parents did not give informed consent. However, during the duration of the camp they both wished to participate. I allowed them to join in the study activities, such as testing the prototypes, without using the data.

These examples show how difficult it is to understand the mindset of the teenagers and how shifting states and interests challenge our work as a designer. We are asked to accept the fact that engaged participation and subsequently rich research data are not always as easy to obtain as planned. Each participant taking part in research is unique and might have different needs and ways of articulation. Thus, sensitivity by the researcher is needed to adapt to the unpredicted conditions as best as possible to find a third space.

Different external factors can influence the participation in activities. Additionally, the need to cooperate with people suffering from diabetes had to be acknowledged when planning activities. In my case, this affected the collection of data in terms of the limited length of sessions and necessary interruptions.


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In the design sessions and interviews, special attention and tolerance were needed to prioritise the diabetes care of the individuals, such as in allowing interruptions or cancelations. Thus, it was unavoidable that workshop activities were interrupted, since participants had to measure blood glucose levels and even needed to pause or drop out for a session.

Some interviews had to be cancelled, because the participants were not feeling well, even when having agreed five minutes before that they wanted to participate in the interview. Furthermore, mood states can be related to blood glucose levels; in other words, low blood glucose levels are associated with negative mood states (Gonder-Frederick, Cox, Bobbitt, & Pennebaker, 1989). Thus, it was sometimes a challenge to reflect on the reasons for the restrained engagement of some participants, the disease, the fact of being a teenager, the method itself or a mixture thereof.

2.6. METHODOLOGICAL REFLECTIONS AND CONCLUSIONS

I involved children and teenagers living with diabetes in different stages of the design process in my research project. Choices of setting, participants, methods and materials, as well as the resulting reflections built a base for answering the first research question of this thesis (RQ1). To address RQ1, I want to point out two concrete contributions of my study: first, the diabetes summer camp as a site and setting for data collection and design participation and secondly, the use of user mock-ups as a technique and material choice in the early design process.

2.6.1. FACILITATING DESIGN PARTICIPATION IN A CAMP

During the three times I carried out studies in a summer camp, I experienced the opportunities and challenges of facilitating design participation with young people living with diabetes. Conclusions drawn out of theses experiences, are presented in the following; focusing hereby on the key attributes of the summer camp as a site for design participation. Additionally, reflections on concrete qualitative and quantitative techniques used in the camp can be found in Chapter 3 and in the papers II to V.

2.6.1.1. Willingness and consent for participation

A perquisite for design participation is to find people willing to take part in activities. I have experienced the drawback of not being able to find the expected number of participants before choosing the camp as the site for data collection. Other studies have also described the challenge of finding participants for their research activities, such as (Tsvyatkova & Storni, 2014). The summer camp promotes a setting where people are willing to contribute to the research.


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As a result, a large number of participants, even of the same age group, were willing to participate in the research and their caregivers were amicable to giving their consent. In addition, the camp environment facilitated easy contact with other stakeholders, clinical staff and, to a certain extent, parents. Thus, the camp contributes by being an institutional construct, being a host for a number of youths all living with diabetes and by providing the absence of busy everyday life as a space which promotes willingness to participate and to contribute to research.

2.6.1.2. Maintaining participation

While obtaining consent for participation is the first step for research, a by far more significant challenge is maintaining the participants’ motivation to continue participating by facilitating a number of activities and allowing the creation of a hybrid “third space” (Muller, 2007) between designer and participants. Wrapped into the camp setting, external events as well as the condition and mood of the youths can challenge scheduled activities and limit the overall maintenance of participation (cf. papers III, IV, V). Nevertheless, the camp in itself can trigger opportunities for cooperation, since the researcher/designer is present the whole time. This can result in unscheduled conversations, reflections and even activities initiated by both youths and clinical staff (cf. Paper IV). Thus, a summer camp site can be used for rich data collection and intensive participation but assumes the researchers’ flexibility and adaptability to fit with the conditions of the camp and to tailor proper materials and techniques in a reflective process.

My case showed that it was not only possible to facilitate participation within an intense period of one iteration but throughout a whole design process, involving participants in three camp iterations. Thus, the camp can be a valuable site to cooperate in regard to vision, operative image, and specification (cf. Löwgren & Stolterman, 2004) by creating, exploring and testing concrete prototypes and having access to a critical mass. Moreover, it allows the researcher to study the intersection of mobile technology, youth, learning and diabetes and thereby to understand the situation and needs beyond the product.

2.6.2. FACILITATING PARTICIPATION THROUGH USER MOCK-UPS

I worked with user mock-ups in camp iteration 1 as an example of how to facilitate design participation with youths living with diabetes in an early design phase. I chose to use this technique – users designing prototypes by making mock-ups with different materials – to evoke their creativity in regard to future mobile technology and to facilitate the young people’s emotional expressions. Hereby I aimed at engaging users in design activities such as sketching to obtain reflective (rather than reactive) insights (cf. Tohidi, Buxton, Baecker, & Sellen, 2006).


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In Paper II, I present this technique and elaborate on how the results of those mock-ups can be understood, that is, by conceptualising the users visions and emotional expressions and thus inform future design.

2.6.2.1. Evoking creativity and articulation

Providing a design toolkit with different sorts of materials proved to be useful and appropriate, allowing the youths with diabetes to express ideas for mobile technology. Giving the participants room for creativity yielded a number of very different mock-ups not restricted by a presumed design or functionality.

While I used the technique of user mock-ups in scheduled workshops during Camp 1, some youths used this technique on their own in camps 2 and 3 (cf. papers IV, V). Engaged participants created self-directed user mock-ups to initiate conversation with me. The tool helped them to articulate their ideas for mobile technology, such as an alternative game design proposal in reaction to a tested game. In this respect, the technique proved to bridge the gap between the participants and me as researcher. It allowed the participants to express their thoughts through their design and stimulated dialogue about design ideas in an unobtrusive way.

The technique of user-mock-ups was used additionally in the maXi project, where families (with at least one family member with diabetes) formed design teams to create mock-ups for maXi technology: IT services supporting families living with diabetes (Kanstrup & Sørensen, 2008).

2.6.2.2. Articulation of emotions

Through the creation of user mock-ups, participants articulated their ideas for mobile technology. While this expresses their visions and dreams, it also reflects on previous experiences (Sanders & Stappers, 2008). I argue that the participants’ designs, the user mock-ups, are tangible reflections on their everyday life with diabetes. Through design and the discussion about the design, the youths can tangibly express their inner thoughts and emotions. In this way, the mock-ups are “external manifestations of thoughts” (Lim, Stolterman, & Tenenberg, 2008) which are difficult to communicate solely through spoken language. The technique of user-mock-ups enabled the youths to materialise their feelings and dreams about how to cope with being young and having diabetes at the same time.

2.6.2.3. Understanding articulations

During Camp 1, a workshop was conducted using the technique of user mock-ups and resulted in twelve mock-ups. The technique worked well when it came to facilitating the articulation of the experiences, dreams and visions of young people


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living with diabetes. However, one challenge of the technique was how to understand the results and how to translate those into concrete design.

Analytical inspiration was found in understanding the participants’ emotions expressed in the user mock-ups by moving towards an understanding of the emotions behind their expressions. In understanding the expressed emotions, inspiration was found in Bateson’s “Style, grace and information in primitive art” (Bateson, 2000, p. 128 ff.). The mock-ups can be seen as a “particular sort of partly unconscious communication” and as an “algorithm of heart” (Bateson, 2000, p. 139) which are difficult to express in spoken language.

The analysis of the mock-ups resulted in three themes: identity, burden and connectivity. For each theme, emotions and feelings as well as general design principles emerged. Thus, besides the pedagogical and medical requirements, the emotional themes had an influence on the learning design, that is, the designed prototypes explored in camps 2 and 3.

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CHAPTER 3. DESIGN TRAJECTORY AND DESIGN EXPLORATION

This chapter focuses on getting closer to an understanding of the youths’18 view on mobile learning. Based on the designs of the research and related empirical data collected in three iterations in a summer camp, I aim to answer how young people living with diabetes perceive mobile learning (RQ2). I want to study the youths’ reactions to designs and their attitudes as well as their motivation in regard to learning about their disease with technology. This investigation should contribute to the impact of mobile learning not from a medical viewpoint but rather from a very personal view, addressing the children’s expectations, perspectives and experiences.

Figure 3–1: Relation of the four studies conducted during three camp iterations

18 Here, youths living with type-1 diabetes


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As presented in Figure 3–13–1, the investigation comprised four case studies and related designs: a set of user mock-ups created during a design session (Study 1) and two prototypes implemented and explored during my PhD project (studies 2a, 2b and 3). Study 1 was conducted during summer camp iteration 1. The results influenced the design of the two prototypes, which were explored in Study 2a and Study 2b. Thereupon, the prototype of Study 2b was further developed (influenced by the results from Study 2a) and finally tested in Camp 3.

In addition to the presentation of the studies and designs, I will elaborate on the underlying design trajectory in relation to the abstraction model by Löwgren and Stolterman (2004). As described in the methods chapter (cf. Chapter 2), the vision was central for iteration 1 (Study 1). In iteration 2 (studies 2a and 2b), the operative image and in iteration 3 (Study 3), the specification was the main focus, respectively (as visualised in the illustrations on the right in Figure 3–13–1).

The following sections present the studies, the designs and their relation to the abstraction model. This forms the basis for further elaboration and discussion of specific aspects of the designed artefacts and their exploration in use, focusing on the youths’ viewpoint.

3.1. A TOO VISIONARY VISION

When starting the research, my vision of supporting youths with mobile learning was focused on cooperation and learning in day-to-day situations. This vision was influenced by learning theories, specifically situated learning (Lave & Wenger, 1991) and constructivism (Piaget, 1953). Furthermore, I was interested in exploring the notion of mobile and location-based learning supporting the access of information and facilitating learning blended into everyday situations, such as at home, in school, in town and at the supermarket (Berge & Muilenburg, 2013; Kukulska-Hulme & Traxler, 2005).

During the preliminary research, I recognised that this vision did not fit with the focus on youth and on learning. The vision was technically interesting and solvable19, but the identified learning challenges were too difficult to be handled “on the go”. Rather, in everyday life and in particular outside home, the main focus is to cope and struggle with the daily routines and tasks. Thus, creating a space for learning emerged as an important aspect when designing for this specific target group. This path was reinforced during the first case study (cf. Paper I, 3.2.4.3).

19 The maXi project successfully developed and tested location-based information in restaurants and supermarkets in order to make food information better accessible (Kanstrup, Glasemann, & Nielsby, 2010).


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3.2. STUDY 1

The study was set in the early stage of my project. I had decided to move from a Danish to a German user group, looking for a “thick description” (Geertz, 1973) focusing on learning design by exploring the context by participating two weeks in a summer camp (cf. Chapter 2 for elaboration on this issue).

3.2.1. AIM

The aim of this study was to initiate the participatory design process of my research. Hereby I had two foci during the study: one focus was to involve the youths in depth. The intention was to externalise the youths’ perspectives on design, their design expectations and their thoughts and visions for mobile diabetes technology. However, the central activity was a design workshop with the participants of the camp. Twelve girls and 12 boys with type-1 diabetes (aged 10 to 16 years) designed their mobile diabetes supporter alone or in groups of two or three in a 45-minute session. While here the results – the designs and analysis – are in focus, the technique used is introduced in Paper II and in the methods chapter (cf. Chapter 2).

The second focus was to investigate concretely, which learning challenges diabetes creates for the youths. The preliminary studies had already pinpointed the challenge of numeracy. Thus, I sought an in-depth explanation for the existence of this problem. The summer camp encourages a variety of informal and formal learning activities and thus was an ideal place to study the learning theme. Hereby, different techniques – including observation, participation, and interviews – were used to collect, understand, and identify the challenges children have when learning informally and formally about diabetes.

3.2.2. RESULTS – THE YOUTHS’ VISION

The workshop resulted in 12 user mock-ups: sketches designed with pen, paper, stickers, modelling clay, and other materials. Photographs and transcripts of the conversations about the designs were used as data material for analysis. Hereby the participants’ designs and their articulations about their designs were considered reflections about everyday life (Tohidi et al., 2006), in this case their everyday life with diabetes. Consequently, I examined what the design results revealed about how the participants cope with being young and having diabetes at the same time. Focusing on the emotional articulations integrated in the users’ design language, conducted in an open coding process (Strauss & Corbin, 1998), revealed three themes, including youth identity, the burden of being young with a chronic illness, and the need to be connected and feel safe.


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3.2.2.1. Let me be young – Identity

The young people expressed a dream of just being young with all that that entails. Similar to Pullin’s examples expressing the need to think of fashion and identity in medical devices (2009), the participants designed diabetes wear (as opposed to technology for diabetes), where diabetes is wrapped in fashionable youth design. They emphasised the wish of being respected as youths, where the disease is blended into their everyday life. Through their aesthetic and very individual designs, the youths were expressing their wish that their personalities and individuality be respected. The designs were for example, jewellery with an indicator for health status or a food database, or diabetes devices with fun-functionality or elements. This emphasised the positive aspects of life, calling for “cool”, funny and fancy designs, encouraging enjoyment and happiness and deflecting the melancholy and displeasure the disease can entail for the youths.

3.2.2.2. Make me think less – Burden

Young people feel an inner burden when having to cope with the disease on a daily basis. These feelings and emotions were articulated via the youths’ mock-ups expressing a wish for technology to substitute for or connect to instant information and services or experts aiming at lightening the load of having diabetes. The participants imagined an easier way of living with diabetes by suggesting technological support in relation to different diabetes tasks – the determination of carbohydrates, regulating blood glucose values, help in case of emergency – expressing their hope and trust in reliable technology. They even imagined avoiding being confronted with the disease at all in suggesting a fully automated device, eliminating the need for any active participation.

The youths and their designs call for giving back again the early transferred responsibility a teenager living with diabetes has to take over in everyday life outside the home. This assistance would allow them to reduce the challenges, uneasiness and worries about the frightening and never-ending disease towards a more relieved and relaxed everyday life.

3.2.2.3. Make me feel connected – Connectivity

Almost all participants called in their mock-ups for different types of sharing and networking activities. Being connected is central to feeling safe and being included in society in general. Emergency functionality and back-up systems would enable emotional control and ensure help in an emergency, where they are frightened of collapsing unnoticed and of being helpless. Moreover, the youths expressed through their designs their need for connecting virtually and/or personally, sharing empathy and experiences with others facing the same challenges and struggles as them.


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3.2.3. CONCLUSION – UNDERSTANDING EMOTIONS

The results, presented in the previous sections, demonstrate the youths’ vision, that is, their perceptions of mobile technology. Hereby, the learning aspect took a minor role and challenged my perspective on learning design. By understanding emotions in the youths’ designs, the contradiction between their visions and the perspective on learning could be dissolved.

Analytic inspiration was one way of seeing and listening to the young co-designers’ presentations of mock-ups, where the functionality is unrealistic or fanciful and moving towards an understanding of the emotions behind their expressions. Thus, the task was to understand the emotions, such as from a mock-up presenting a mobile device, which the young users could plug into their ears before bedtime and then in the morning know everything they need to know about diabetes. The mock-ups can be seen as a “particular sort of partly unconscious communication” and as an “algorithm of heart” (Bateson, 2000, p. 139). This perspective highlights that the young participants’ mock-ups are a different language from spoken language and give insights to emotions that are difficult to express in the “algorithms of language”.

The emerging design principles were based on the youths’ visions to be seen not as solutions but rather as organising principles, such as a preliminary idea or a thought on form or function (cf. Löwgren & Stolterman, 2004).

3.2.3.1. General design principles

Based on the themes related to emotions, design principles were developed, as follows:

• Youth technology with diabetes functionality: designing for youngpeople living with diabetes means emphasising the emotional themesrelated to their age group as well as those concerning their disease.

• Lightening the load: designing for young people living with diabetesmeans reducing their day-to-day load so they feel more comfortable andless confronted by the disease.

• Possibilities to connect: designing for young people living with diabetesmeans focusing on the individuals as well as their surroundings to enableconnections to others to get help, to share, to cooperate with or to learnfrom.


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3.2.4. THE CHALLENGE OF AND NEED FOR LEARNING ABOUT DIABETES

Two weeks of participation in the camp allowed me to get a deeper understanding of the challenges of and the need for learning about diabetes. The results can be summarised according to the themes in the following sections.

3.2.4.1. Challenges with numeracy

In addition to a number of different diabetes facts important to learn when diagnosed with diabetes, numeracy skills are important in everyday diabetes self-management. The following short vignette, made from the empirical data, illustrates the crucial and complex activity adolescent children are confronted and challenged with:

A girl with diabetes, aged 12, Sonja, and her friend go to the cinema after school. For their afternoon snack, the friend suggests buying cookies at the supermarket. Sonja has not tried these cookies but agrees with the suggestion, since she knows that it is ok if she injects insulin. She needs to determine how many grams of carbohydrates (respectively bread units; one bread unit is 10–12 grams of carbohydrates) are in the portion she wants to eat. But this is challenging, because the package lists only the carbohydrates per 100 gram. Her blood glucose value is in the normal range, thus she has to multiply the amount of bread units with her individual factor (e.g., 1.25) for that specific time of day. If the blood glucose value was, for example, too high or she were to go ice skating, she would have to incorporate these factors into the calculation as well.

Sonja might avoid having to do parts of the calculation by estimating the bread units, referring to a list of carbohydrates in a book, selecting food better labelled, having an insulin pump which could do part of the calculation, or by asking her mother to help her. Yet, good numeracy skills are essential in the life of a person with diabetes (Wolff et al., 2009).

The vignette illustrates two self-management challenges where numeracy is central: counting carbohydrates and understanding the dynamics of diabetes. These two challenges took a major focus in the future prototype designs and framed the integrated learning content.

3.2.4.2. Challenges of formal teaching

The camp encourages a variety of informal and formal learning activities. Besides being involved in leisure activities and continuous diabetes management, the youths


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have to participate in several learning sessions about diabetes and related topics (e.g., nutrition, sport, traveling). It was observed that these lessons were mainly conducted in a teacher-centred style, where the teacher asked questions to promote discussion about different situations related to the topic. However, rarely did a real discussion emerge. In particular, in older groups (aged 12 to 15), teachers criticised the low participation or students disturbing the session.

Showing little or no motivation, sitting obstinately silent and listlessly following class lessons is understandable behaviour when considering the context in which the lesson takes place: a location in the middle of a wood during summer holidays.

3.2.4.3. The need for creating a space for learning about diabetes

Learning perspectives are argued to be found in traditional self-management systems on the basis of registered data. Self-management systems can be used in a “learning mode”, where the analytic use of standard diabetes data is regarded as support for reflection on action (Boisen, Bygholm, Cavan, & Hejlesen, 2003). As shown in Sellen et al. (2007), data can support recall and recollection. Mamykina et al. (2008) argued that learning requires more than memory support.

From an interaction design perspective, I understand this problem similar the problem with the Swiss knife. Norman (1999) presented the notion that the Swiss knife is ideal, because it is an “all-in-one” application. However, this all-in-one requires a trade-off in that none of its tools are ideal compared to the knives, scissors, tweezers and screwdrivers in an ordinary household. I emphasise the risk of regarding learning as an add-on feature. It is too dependent on other functionalities – if self-management, such as tracking of medical data, is not performed, learning based on the tracked data cannot result either. Norman stated, “Some people will prefer appliances optimized for the task, others will prefer them optimised for all-in-one convenience” (Norman, 1999, p. 62).

The research focused on supporting learning through learning design. Consequently, I saw learning as more than an add-on to self-management tools (cf. Paper I). Based on this perspective, I concentrated on designing learning prototypes for the camp setting and in this way created a space for learning about diabetes.


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3.2.5. TOWARDS AN OPERATIVE IMAGE

In summer camp iteration 1, data from different perspectives were collected to be analysed and synthesised into an operative image. By keeping the learning perspective in focus and by considering the youths’ perspectives and their emotional articulations, I further developed the general design principles towards the following choices:

• Provide a choice of mobile technology as a platform for the design. Design stories aiming to portray the world of young people living with diabetes.

• Create mobile games to transfer the clinical learning tasks into a game universe. Reduce the load by empowering them with learning experiences in contrast to traditional learning material and teaching practices.

• Design collaborative learning tools supporting the co-solving of tasks to encourage sharing and discussion. Promote competitions that connect and motivate learning.

In summary, Study 1 aimed at familiarising myself with the design situation, including the domains, the users, and the design focus. Hereby, I distanced myself increasingly more from the early vision due to changing conditions and an increased understanding of the design situation. Through participation in the camp and by accounting for different perspectives, new visions emerged. The youths’ visions shaped in sketches – the user mock-ups – yielded in themes presenting the youths’ inner thoughts.

Tensions that arose could be unfolded through an analytical approach to the youths’ perspective by understanding their emotions. In this way, it was possible to find design principles negotiating the youths’ view and the learning focus. During the design process (off-camp B, cf. Chapter 2), different sketches were created in an attempt to address the different visions, perspectives, constraints and to work on the operative image. Finally, this led to two prototypes to be explored in Study 2a and Study 2b within summer camp iteration 2.

3.3. STUDY 2A

Central for this study was a mobile game scenario, which focused on an active, collaborative, problem-based learning approach. The study is explained in detail in Paper III.

3.3.1. AIM

The study intended to investigate the potential of a mobile game scenario as a means for enhancing youths’ motivation to learn about their disease in a diabetes


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summer camp. Hereby, a prototype was intended as a complement to the existing formal, teacher-centred lessons on diabetes. The learning content was focused on understanding and practising the dynamics of diabetes by confronting the players with staged self-management tasks by facilitating active, collaborative, problem-based learning with a location-based game.

3.3.2. LEARNING PERSPECTIVE

My learning perspective is based on the broad landscape of socio-cultural learning theory. Learning is considered as an active process, which stands in contrast to the assumption that learning takes place by knowledge being transmitted from a teacher to a student. Thus, the learner has to be actively involved and to participate to build up knowledge structures based on their own experiences (Papert, 1991; Piaget, 1953). This challenges the traditional learning style and perspective observed in the diabetes lessons at the summer camp. Referring to Lave and Wenger (1991), I understand learning as a social practice. Thus, learning takes place through interaction within and through the support of a community. Actual situations, scenarios, and environments encourage the learner to learn better and to remember and transfer basic concepts more easily (Gee, 2008).

Situated learning, namely activities in a meaningful context, can help learners to apply the acquired skills and knowledge in new situations to their everyday lives (Lave & Wenger, 1991). From this, I assume that relevant and authentic learning scenarios faced in the safe setting of the camp would help them better prepare to handle situations outside the camp. Even staged situations can move the learning activities closer to everyday self-management situations.

3.3.3. THE PROTOTYPE “THE DRAGON QUEST GAME”

The game is framed by a story about a dragon needing help with diabetes management. The game includes diabetes-related tasks that focus on numerical understanding to be solved in different locations of a diabetes camp. The players, equipped with a mobile phone, have to spot QR-Codes20 in the environment. By accessing QR-codes with the mobile phones, the users are guided through the story and the different tasks (challenges). The use of physical artefacts is a perquisite to solving the tasks. The prototype is implemented semi-digitally, that is, solutions are recorded with pen and paper. During a follow-up discussion, the players reflect and get feedback on their solutions.

20 QR-Code (Quick Response Code): a two-dimensional barcode encoding data like links, audio, images or text https://en.wikipedia.org/wiki/QR_code


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Figure 3–2: “The dragon quest game” prototype: a) Setting: Placement of tasks and QR-codes of the mobile game in the camp area b) Screenshot: example of a food estimation challenges with real food objects

3.3.4. DATA COLLECTION

The game scenario was tested with a small group of users: four girls divided into two groups (aged 10 to 13 years). The reason for and limits of involving a small number of participants is explained in Paper III. Furthermore, a diabetes educator was involved. Observation and informal conversations were used to analyse the youths’ perceptions of the prototype and implications for future design.

3.3.5. RESULTS

The exploration of the mobile learning game scenario can be summarised from the youths’ and the educators’ perspectives.

3.3.5.1. Youths’ perspective

The intention of the study was to explore the concept of the mobile game scenario; herby, the youths’ perception was in the foreground according to five investigated themes:

• Foster active participation: Participants articulated preferring to be actively involved in comparison to traditional teacher-centred lessons. This supports the social practice of the learning paradigm the game concept was built on.

• Use the environment and foster mobility: The concepts of mobility and mixed-reality were seen as positive for the game experience in comparison to solely digital tasks on the screen, supporting the importance of “wrapping” the diabetes content within games, stories and playful interaction and activities.


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• Facilitate dialogue: Peer communication was seen as both motivating and supportive but partly also challenging due to difficulties in collaborating on solutions or too-difficult tasks for which adult support was preferred to using the technology to solve the task on their own. Discussing the solutions with the instructor after the game was shown to be a requisite after the game to reflect on the solutions.

• Use technology to enrich the learning experience: The use of technology was experienced as very an important and engaging motivator in the game. The low fidelity of the prototype (paper-based documentation of the solution to be discussed after the game) was not seen as a barrier. Thus, mobile phones played a central role and were a mediating actor in supporting a mobile, engaging and collaborative learning experience.

• Prepare for real-life diabetes situations: The participants considered the tasks solved in the game very relevant for their own everyday practices. However, different standards challenge the collaboration on some tasks due to varying resulting practices.

Based on the youths’ perceptions – their reactions to the prototype and their ideas on future design – one can conclude that the mobile game scenario proved to be a promising concept worth developing further.

3.3.5.2. Educators’ perspective

The focus on an active, collaborative, problem-based learning approach fits well with the camp setting and attracted the target group. However, different boundaries challenged this approach, including individual needs, capacities, and preferences on learning in a collaborative learning scenario, the risk of deflection through technology within a blended learning scenario, adequate assistance, and reflective discussions to support learning (cf. Paper III).

The major challenge is not grounded in the learning approach itself but in the available resources to implement the scenario, in contrast to the prevalent formal teaching methodology of the camp. The organisational efforts needed for this educational setting seemed unfeasible for the involved diabetes educator in future. Preparing the scenario in the physical space and coordinating the use of technology would demand too much time, even when being able to use pre-designed game scenarios with stories and challenges. Traditionally, the educators grounded their lessons on paper-based teaching materials and paper worksheets, with very little preparation time. For my learning scenario, the educator would need to adapt the learning content, and setting and in this way to become a designer. The scenario, as explored, would require extraordinary resources if it is to be implemented for a larger user group in the camp.


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3.3.6. CONCLUSION

This study showed that multiple perspectives have to be considered when moving towards a specification for learning design. The operative image provided insight into the practical challenges of bringing digital learning design into an established educational setting with predefined learning perspectives and limited resources, such as the camp constituted. Organisational boundaries would challenge the implementation of an advanced design in the existing educational setting. Thus, the implementation towards a more concrete specification was discarded. The game concept was not further pursued in the following research.

Nevertheless, the explorations of Study 2a gave important insights into the potentials of such a learning scenario and about the challenges and possibilities of creating learning materials in relation to numeracy skills. The collaboration aspect and the aspect of wrapping learning content into a nice package were confirmed to be important and were further considered in the following research.

3.4. STUDY 2B

Central for Study 2b was a mobile game, similar to Study 2a. However, the study had a different perspective in relation to learning content, usage scenario and prototype characteristics. Its prototype is a simple training game designed for mobile phones encouraging young users to practice their knowledge and skills relating to the identification of carbohydrates in food through solving quiz-like tasks in the form of mini games. The study is explained in detail in Paper IV.

3.4.1. AIM

The intention of this study was to explore the concept of mobile mini games by means of motivating participants to learn about carbohydrate counting. The learning content was focused on teaching and assessing the estimation and calculation of carbohydrates. A low-fidelity prototype was used as a design artefact. Hereby, a small group of users (focus group) as well as dieticians were involved in the different activities to:

• Validate the learning content and discuss the needs and potentials of improving carbohydrate skills with a game.

• Observe and discuss the ease of using the prototype, and find implications for design.

• Give the selected users room to express their own ideas for learning about diabetes.

• Explore the use of the prototype in a formal diabetes education setting with a larger group of users.


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3.4.2. LEARNING PERSPECTIVE

Study 2a (“the dragon quest game”) applied a learning perspective contrasting the traditional teaching practice of the camp by using an active, collaborative and problem-based approach. Hereby, the implementation encompassed blended learning and location-based functionality. Alternatively, this study (Study 2b) took as its point of departure a minimalistic, low-fidelity setup. It was based on the observed teaching practises in the camp. The intention was to acknowledge the given frame and constraints of teaching and to study the potentials of mobile technology to build on top of this.

The camp teaching concept includes assessing the camp participants’ skills and knowledge related to diabetes. The usefulness and validity of testing the performance is seen to be critical, in particular to the social learning perspective (cf. Lave & Wenger, 1991). However, assessment is a fundamental part of diabetes teaching in order to support self-management processes (International Diabetes Federation, 2009b).

Mobile technology allows for the flexible framing of assessments. Assessment can be combined with learning by enabling self-assessment and instant feedback. Learning content as well as additional instructional materials can be tailored to individual needs, for example, through the choice of complexity, difficulty and progression. In this way, the learning design should scaffold the learner aiming on creating a zone of proximal development (Kim & Hannafin, 2011; Vygotsky, 1978; Wood, Bruner, & Ross, 1976). This might be a particular advantage in the camp, where even children of the same age have different diabetes histories, different levels of maturity, different skills and different practices. Implementing a prototype based on mini games in a quiz style was based on micro learning (Hug, 2010).

In my study, I wanted to address real-life problems in everyday practice instead of assessing factual knowledge. The food issues and related numeracy skills emerged hereby as one key challenge and basic requirement for more complex self-management tasks (cf. Paper I, Paper II). The prototype was grounded on the two strategies adopted by families when counting carbohydrates: the accuracy strategy and the see-and-guess strategy (cf. Paper IV).

3.4.3. THE PROTOTYPE “THE FOOD QUIZ” – VERSION 1

“The Food Quiz” is a mobile game consisting of a selection of mini games. Each mini game is a short-term/brief activity of a number of similar tasks, which are randomly selected out of the larger collection of the level. The game is implemented on mobile phones, which enables the game to be played indoors as part of diabetes lessons but also outside as a social activity with others.


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The game allows the participant to practice carbohydrate determination, that is, estimation and calculation based on representations of food (presentations of photographed dishes or food, or of food product labels stating the ingredients). The estimation part (cf. Figure 3–33–3, a) is about remembering food items from memory. The player has to select the correct amount of bread units21 based on the description and a photograph of the food. Lower levels in the game display single items (e.g., fruits), while higher levels display combinations of items or dishes. The calculation part (cf. Figure 3–33–3, c) deals with exact carbohydrate counting based on food labels displayed on the screen. Dependent on the game level, additional help is offered for solving the task. However, help descriptions on paper were used for the prototype exploration22. The amount of carbohydrates is requested instead of the final bread units in order to avoid guessing.

Figure 3–3: Screenshots from “The Food Quiz” prototype (translated version): a) estimation example, b) feedback on a correct answer, c) calculation example, d) help description


For the study, a prototype with rudimentary features was developed and was a focus of exploration in the camp. Hereby, the following techniques were applied:

• Interviews with dieticians: Semi-structured interviews were conducted with two dieticians to focus on the problem of carbohydrate counting.

• Exploring the prototype with selected users: The participants played the game individually or in groups followed by an informal conversation.

21 In Germany, a bread unit (German: BE = “Broteinheit”; or carbohydrate unit) is used to represent between 10 to 12 grams of carbohydrates in food. 22 It was an important aspect of investigating the scaffolding of help materials, guidance and levels by involving the focus group in the camp


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• Design activities with selected users: The participants sketched new ideas for learning about carbohydrate counting.

• Exploration in three diabetes lessons: The prototype was explored as part of a regular diabetes lesson with 34 participants aged 10 to 15 separated into three groups. The use of the prototype was to complement the traditional ways of testing knowledge about carbohydrate counting (i.e., in paper-based tests). The participants individually played one mini game. Afterwards, in two of the three groups, the participants described their experiences with the game and discussed these experiences in the group.

3.4.5. RESULTS

While the prototype of Study 2a had a rather complex scenario, the prototype of this study and the concept behind (food problem) was very concrete and specific, fitting well with the existing teaching practices in the camp. Consequently, the prototype and the food problem as such became a persuasive theme during the camp, leading to reactions on the operative image.

In the following, I summarise the results by trying to focus on how the youths perceived the artefact and how this led towards a more concrete specification or even to new or old visions. I put the youths’ perspective in foreground, derived through observed reactions, feedback and discussions.

3.4.5.1. Confirming the operative image

“The Food Quiz” prototype was a simplified version; that is, only basic content and a few game-levels were implemented, and limited extra materials were drafted. The study was an exploration to investigate the potentials for learning with the chosen operative image in order to give implications towards a more concrete specification. It was not intended nor did it have the scope, to test better learning about food with this prototype.

The concept of the game was explored successfully, and mobile gaming features such as interactivity and feedback functionality showed advantages over traditional, non-digital assessment. The feedback as well as observations revealed that help materials were seen as useful tools to solve the tasks. The youths could even progress to more difficult tasks. Engagement in practising was identified. Even new self-initiated learning and usage scenarios were formed, indicating motivation by creating competition and social learning activities.

The youths endorsed the prototype concept in general. Additionally, they gave constructive feedback on specific features of the game for redesign, such as alternative or advanced interaction and visualisation, advanced storyline, plot, characters, longer lasting games, comprehensibility of extra materials, competition


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against time and against other participants, and support by a capable peer (cf. Paper IV).

In summary, the exploration of the prototype showed that this way of learning about diabetes was seen as a potential in terms of learning and motivation. The food problem was confirmed to be a key skill in diabetes education both from the youths as well as the health care specialists. However, constraints in relation to the operative image and concurrent visions also came up (again), which are discussed in the following section.

3.4.5.2. Challenging the operative image

The design decisions I took for Study 2b were challenged during the exploration on two levels: a) on the operative image in relation to the choice of learning content and b) on the vision of focusing on the learning perspective.

The chosen learning content on the food issue, which is a very specific but crucial topic in diabetes management, was found to be complex in itself. The prototype has a scaffolding approach; that is, in lower levels, calculation tasks are split into subtasks, and there are easy calculation tasks, as opposed to the more complex calculations in higher levels.

The exploration showed that some participants did not know how to solve the calculation with nutrition panels at all and instead focused solely on estimation. While some were willing to learn the calculation approach, others did not consider calculation to be important and refused to calculate. In addition, the ways of calculating using the nutrition tables was diverse. Whereas some accepted the suggested math, others got confused because of the help materials due to other practices in doing the calculation (cf. Paper IV).

It is a challenge to assure that learners do not adopt other practices if they do not completely understand them. Following the rules of the game (i.e., following the suggested ways of calculating) seemed to help those new this calculation practice and aided them in recognising and memorising this practice. The ambition of scaffolding the learning content to the individual youths proved to be a challenge for the chosen learning perspective.

The diversity in practise and knowledge within the group of children with diabetes was addressed by offering two types of functionalities (estimation and calculation) and by offering different game-levels. Still, the quiz style approach and through the delivery of help materials, the solution space is rather fixed and does not work well with everyone. In this respect, the prototype of Study 2a and also individual informal learning outperforms the fixed frame of the assessment approach, since it allows negotiation.


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When I gave the participants the opportunity to think of new learning games, some suggested instead of games supportive tools similar to those suggested in Study 1. It was agreed that mobile tools for looking up food items, and their visual representations, might facilitate the activity of counting carbohydrates better than relying on the old fashioned books they use at that time. This, made it more difficult to correlate opinions about the necessity of being able to calculate based on nutrition tables.

The experts’ views on this issue was also diverse and reflected how different their views are on what role technology should play. The involved dieticians persisted in their position as educators and emphasised the need to prepare the youths for different situations in real life instead of letting them rely on a device. They saw the game as additional and as a motivating intervention to diabetes food lessons to let young people with diabetes practise. In contrast, personal conversations with other educators support the notion of making the kids’ lives easier with technology. This is a position similar to the youths’ perspective in thinking technology should be an automated device that supports relief from the burden and thus challenges the vision, focusing on the learning perspective.

3.4.6. CONCLUSION – CHOCOLATE COVERED BROCCOLI

When giving the participants space for envisioning their dream technology, they suggest technology to escape from the burden, similar to the reactions of Study 1. But when faced with a concrete artefact, as in Study 2a and Study 2b, the participants showed a willingness to take on the challenge and in this way to cope with the burden. They call solely for nice packaging, making the learning less visible and more fun, allowing them to forget the burden. Thus, the participants called for more “chocolate” covering the “broccoli”, that is, the learning.

3.4.6.1. Towards a specification

The explorations of the prototype and the conversations triggered about carbohydrate counting with the different stakeholders (young people with diabetes and health care professionals) gave implications for further developing the prototype by addressing usability, learning, gaming and organisational aspects. Hereby, the different concurrent perspectives became obvious.

Four design directions emerged based on the exploration of the prototype, as follows:

• An open framework: enabling the participants to reuse and adapt learningcontent to the individual groups and hereby allowing them to extend therepertoire of predefined tasks


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• Social and help functionality: acknowledging social learning as well as different learning styles

• Combining learning games and supportive tools: enabling access to learning content in daily life

• Adding more “chocolate”: increasing the fun and game elements in the game to mask learning challenges

During the off-camp C phase (cf. Chapter 2), my work as a researcher and designer was to analyse the findings, to work with the constraints, to synthesise the results for the next iteration of the prototype and to design the final study of my project. More concrete research aspects as well as implications for enhancing the prototype towards a specification emerged. The details of the operative image were filtered into a specification for producing a concrete artefact to be tested in a more real learning scenario.

3.4.6.2. Merging two concepts into one

The main redesign decisions for the second version of the prototype derived from Study 2b, the exploration of the first version’s prototype. Additionally, the social learning aspects from both Study 2a and Study 2b influenced the redesign and hereby changed the individual learning tool into more of a social learning tool by framing the usage scenario.

Limited available resources for the redesign were a major constraint, conflicting with the high expectations of the youths. Thus, only specific features could be considered. The main focus in the redesign was to enable investigations for a more in-depth and solid statement about the participants’ motivation and learning. Therefore, a basic requirement was to redesign the prototype towards a more mature status and to allow usage for a longer period. In this way, the general concept of mini games and the learning perspective still formed the basis of the design.

The following main redesign decisions towards a more concrete specification were made:

• Increasing the fidelity and addressing the learning challenges: Extra features, previously existing as mock-ups, were integrated or completed, specifically, help tutorials, game history and feedback, and calculator functionality. I wished to encourage the young people to reflect upon various arithmetic operations and practices rather than unconsciously applying one. This was done through the redesign of tutorials and levels. However, the intermediate step of requiring the calculation of carbohydrates was removed, since the practices had shown to be very individual.


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• Changing the story characters: Instead of monsters, teen characters were chosen to frame the mini games in the welcome screens and tutorials.

• Creating a critical mass: The amount of different learning content and number of levels were extended.

• Creating an open framework for adapting materials: Interfaces were implemented to allow the educators to easily adapt, integrate and enlarge the learning content (and even let students design their own materials).

• Moving towards a social learning scenario: The prototype was kept as an individual learning tool. To support cooperation and group dynamics, the learning scenario was changed to support peer-to-peer usage and increase their motivation through competition. Additionally, they could receive assistance from a more capable peer.

3.5. STUDY 3

The study took place in summer camp iteration 3. The central artefact of the study was the second version of “The Food Quiz” mobile game prototype used by the youths in the camp. Qualitative and quantitative data collections were combined to investigate the youths’ practices, skills, and attitudes regarding carbohydrate counting and their perceptions on using the prototype.

3.5.1. AIM

The intention of Study 3 was to conduct a summative evaluation on carbohydrate counting and its support through mobile learning. The study was to complete the research in order to gain a comprehensive perspective on the carbohydrate-counting problem (in particular) and on the design of mobile learning games for youths with diabetes (in general). Therefore, I chose to involve a broad group of participants using an extended version of the prototype for a longer period of time. In the second iteration of the camp (Study 2a and Study 2b) the intention was to test the operative image and to find implications for a specification. Studying the potentials for learning and motivation was very vague.

Alternatively, this study based its investigations on evaluating the prototype use over a short period of time. To be able to understand the reactions to and perceptions on the prototype, I wanted to additionally investigate the youths’ backgrounds, attitudes, and skills.

I intended to investigate the quantification of the differences that existed in the phenomena, which the qualitative data had pointed out earlier in the study. I chose to use quantitative data collection in combination with qualitative data to be able to triangulate the data towards a comprehensive understanding of youths with diabetes and the design of mobile learning. Finally, I wanted to gain methodological insights


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regarding involving youths with diabetes for a third time during the participatory design process (from vision to specification) in a camp.

3.5.2. THE PROTOTYPE “THE FOOD QUIZ” – VERSION 2

The functionality and usability of the “The Food Quiz” prototype (cf. 3.4.6.2) was extended. However, the mini game concept in quiz form was kept unchanged. Each mini game is a short-term/brief activity of, in this case, five similar tasks, which are randomly selected out of the larger collection of the level.

Figure 3–4: Structure of “The Food Quiz” prototype (version 2)

“The Food Quiz” is divided into seven components (cf. Figure 3–5)23. After starting the game, the user is guided through an “introduction” presenting the purpose of the game with the help of two characters, followed by a login and the choice of game type (“login and main menu”). When the player enters the “estimation game” or the “calculation game”. The player can start at a specific level with a number of tasks to be solved. After the game level is finished, the score is calculated, and a score list of the level is visualised. The help functionality (“help tutorial”), encompassing a level-appropriate tutorial, is accessible at any time for calculation tasks.

23The screens do not represent the succession and the actual number of screens of the prototype but are intended to give a rough impression of the user interface.


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Furthermore, an integrated calculator supports the player during the calculation task. Additionally, hints and feedback are given in both estimation and calculation tasks. At any point in the game, the player can return to the main menu or exit the game. Advanced levels are only shown after having progressed easier levels. New levels emerge depending on the progression of the player. The “game score” and “progress history” visualise the current and overall game progress: the number of questions successfully solved, levels reached, points received, and task history.


“The Food Quiz” prototype was designed for children and teenagers aged 10 and older. The evaluation of the prototype was performed in two setups. The primary target group were children (aged 11.2 to 14.9 years) of the two oldest summer camp groups (Group A). Those youths could use the prototype for four days in a row during their camp stay. Each of those participants had access to the game on a mobile for approximately two hours a day. Hereby, the children could decide on their own the intensity of use as well as in which social context they wanted to use the game (cooperation or competition with mates, contact with nutrition specialist to get help, playing indoors or outside). In line with the camp philosophy to motivate and honour “good” behaviour, a ranking was preferred by the camp organisation.

Therefore, the game scores were summarised at the end of the day for each participants and for the teams. The participants competed in teams of four24 to find a final winner and a final winning team. Since there was not enough time and equipment to involve all the children (aged 10 and older) in the four-day prototype test, an alternative reduced setup for another group aged 9.725 to 12.4 years (Group B) was designed. This group had access to the prototype for two sessions, each lasting about 40 minutes. The participants played the game in pairs with the intention to help each other. A dietician was present to give active support upon request.

For this study, quantitative and qualitative data collections were combined to evaluate the youths’ practices and skills in carbohydrate counting as well as their perceptions and experiences in testing the mobile learning game, including the following:

• Parent questionnaire: involving parents of the participants before intervention

24 Teams were formed based on sleeping room affiliation during the camp. 25 It was only possible to involve whole groups for testing the prototype in the camp due to organisational reasons. Therefore, one girl under 10 (i.e., 9.7 years) was involved.


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• Youth questionnaire: involving children before and after intervention • Assessment test of calculating carbohydrate counting: investigate existing

levels of skills among participants before and after intervention • Probes (postcard and video messages): collected daily feedback within the

four-day prototype test • Observations and informal conversations: related to carbohydrate counting

and the prototype usage during the 14-day camp participation

The data from the questionnaires and assessments reflected perceptions at specific points in time before and after the intervention, but these were detached from the interviewees’ individual contexts and moods. The qualitative data collection helped overcome this dilemma and enabled insights into the course of perceptions over time. Furthermore, the qualitative data offered insights into the diversity of the answers within the heterogenic user group by explaining deviations from the average (e.g., in relation to attitudes, motivations and skills). Being highly involved in the camp as a researcher, a designer and a participant consequently biased the results. Thus, another aspect of using quantitative data was to allow space for a more critical and honest representation of the youths’ perspectives.

3.5.4. RESULTS

The detailed analysis and results of the evaluation are explained in Paper V, while the core findings related to the youths’ perceptions are presented here. The chosen design (i.e., the software, the learning design, setup) triggered diverse and partly critical reactions. Three themes emerged, reflecting on how the design provoked perceptions:

• Low fidelity of the prototype: The prototype was different to mobile and computer games on the market which the sophisticated youths are used to. This might have influenced the rating on the prototype and expectations for more functionality and playability. However, positive feedback on the prototype indicates that high fidelity or high playability is not always presumed as long as the game has a specific value for the individual.

• Extensive use: The test setting provoked extensive use of the prototype (group dynamics, access to the mobile for hours). An initial very high motivation for using the game turned into trying to reach the limits and partly to overuse. This led to disillusion, since more functionality was expected.

• Neglecting or respecting motivation and maturity: A number of participants considered the need for learning about carbohydrates by using the game nonsensical. This effect was provoked and assumed by the research design. I involved a diverse and broad group of youths living with diabetes, independent of their initial motivations and skills in carbohydrate counting. The evaluation revealed that the participants who initially had


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critical views valued the game and/or showed improvements in skills. In contrast, some initially engaged users’ expectations for the game could not be fulfilled. Nonetheless, the context of using the game could influence their attitudes before, during and after playing the game. In this regard, defining the right users/participants of a game that is provided as an intervention reveals constraints and challenges.

The critical claims can be regarded as challenges but also as adding value to the iterative design process, allowing a deeper understanding of the youths and enriching future designs towards a more concrete learning design. In addition, a diversity of positive effects could be identified from the data analysis. The game was found

• to support initial learning,• to allow an upgrading of existing skills (e.g., the method of calculation),• to support repetition and practice to overcome wrong routines (e.g.,

countering carbohydrate-counting blindness),• to support individual learning paths and pace,• to assess and validate current skills,• to support informal learning and to integrate it into daily life,• to motivate the user and overcome learning barriers (due to facilitated

social interaction and the digital game features),• to positively influence identity building (such as having enthusiasm and

pride about the game and presentation skills) and• to acknowledge individuality and to facilitate inclusiveness (e.g.,

respecting different levels of skills and competencies).

Reflecting on the youths’ reactions, the prototype can be considered as a valuable tool which does not only address learning. The evaluation has shown that the prototype can bridge the gap between informal and formal learning and addresses not only aspects of learning but also motivation, inclusiveness and identity building.

3.5.4.1. One more possibility

The practices of families with youths with diabetes showed that mental math was used more frequently and seemed more feasible than supportive tools (e.g., calculators and look-up tables). One design direction could have been to design more adequate supportive tools on which people can rely, thus reducing their burden. However, the evaluation showed that addressing the learning and skill perspectives would be an opportunity to broaden the solution space. The prototype has shown its potential to support the youths on the path of becoming gradually more independent. Thus, it expands the possibilities of solutions to choose from and thus broadens the solutions space.


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3.5.4.2. Casual use

Even the carbohydrate-counting topic, as one of the specific tasks in diabetes management, has shown to be continuously relevant and not only for newly diagnosed people. However, an essential reflection is that, in contrast to other crucial tools needed on a daily basis (such as the insulin pump and the blood glucose meter), learning about carbohydrate counting and its supporting tool is relevant only from time to time and just for short periods during a person’s life with diabetes. With its mini games, “The Food Quiz” promotes casual usage and micro learning spaces. Participants and parents consider the prototype an adequate tool at different and short time spans within a lifelong coping and learning process regarding diabetes, once carbohydrate counting is in focus (i.e., initial learning and repetition).

3.5.5. CONCLUSION – MIND THE AGENCY

The prototype evaluation revealed a range of values as well as of limits and constraints. These should be considered for the redesign of specific aspects of the prototype and for reframing the educational setting, that is, the selection of users and usage setting. The following implications and challenges arose when the game was used within a health intervention setting, such as in a camp:

• Mind the difference of being an obligatory intervention vs. an opportunity for learning.

• Mind the selection of specific participants in terms of honour, duty, inclusiveness, and overburdening.

• Mind the individual practices in relation to facilitating learning content and creating social learning, and competition.

• Mind the selection of participants not only by age; though early years of 10 to 12 years seemed to benefit most from learning with the prototype in terms of acquiring initial skills about carbohydrate counting

• Mind readiness, maturity, and motivation. The game itself could be used for assessing existing skills to define the learning focus and scenarios about carbohydrate counting.

In addition to implications for the concrete setting of an intervention in the camp, other learning settings, such as using the prototype at home or in individual sessions with a health care educator or a dietician, might be alternative paths of investigation. In all respects, the prototype should not be regarded as an isolated tool; rather, the learning design should be considered in terms of facilitated assistance and discussions and how it integrates into self-management routines and processes.


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In Study 3, the perspective on what the design can afford and which affordances exist for the design shifted. While the theme on how to ease the burden through motivation (“chocolate covering broccoli”) was still important, it became obvious that the notion of “the more the merrier” does not always hold. High-fidelity games are no guaranty to counter players alienating themselves from the game (Buday, Baranowski, & Thompson, 2012). The prototype evaluation showed that even with rather visible learning content (“broccoli”) and little “chocolate”, many participants’ perceptions on the mobile game (concept) were positive. They considered it as valuable in various ways and not only for learning about carbohydrate counting (cf. 3.5.4.). In addition, critical perceptions on the prototype were also articulated (cf. Paper V).

In fact, it is important to acknowledge that such a mobile game is not relevant all the time nor is it relevant for every youth with diabetes. I stress that it is important to pay attention to the agency, to the youths’ backgrounds and to their current and shifting attitudes towards their disease and learning about it. Such a mobile learning game, as tested in Study 3, has shown to have the potential to extend the youths’ repertoire in learning about carbohydrate counting and hereby can affect other aspects such as motivation, confidence, and identity.

However, introducing such a mobile game needs to go along with being continually sensitive about the values and also the limits. It becomes valuable when the game succeeds in meeting the youths eye-to-eye. Whereas it fails when they are in a moody phase or have fluctuating attitude.

Even if the medical ideals claim to continually improve self-management and to adhere (Borus & Laffel, 2010), it is important to keep in mind that learning about carbohydrate counting is not omnipresent even though the activity of carbohydrate counting occurs on a daily basis. The prototype with its mini game concept promotes casual usage and micro learning spaces and thus has shown to be one option among others towards a broader solution space in addressing the food problem and supporting learning about self-management, neither more nor less. It might provide an opportunity to become more independent; however, it does not relieve the parents or educators from being responsible in supporting the self-management process in relation to carbohydrate counting.

3.6. REFLECTIONS

Chapter 3 has presented the trajectory of the iterative participatory design and exploration process of mobile game prototypes in a diabetes summer camp. Hereby, I focused on the youths’ views on mobile learning, including their reactions, their attitudes, and their motivation. I tried to investigate the youths’ perceptions on mobile learning (RQ2) by involving them in four case studies and three iterations, from an initial vision leading to the test of a concrete specification. My ambition


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hereby was to understand the youths not only as patients but also as individuals confronted with and challenged by diabetes in their daily lives as teenagers. Whereas I focused on addressing the children’s expectations, perspectives and experiences, other perspectives – specifically the learning focus and the stakeholders’ view – influenced the design as well.

Study 3 was the final of three design iterations within the research project and had a summative character. However, implications and design directions arose which deliver a foundation towards designing more concrete specifications. The design trajectory and the youths’ perspectives have revealed different values and constraints to work with in future designs, when, for example, redesigning the prototype functionality, reframing the educational setting, involving specific participants of youths with diabetes or when choosing new design directions.

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CHAPTER 4. DISCUSSION

In this research I examined design participation (Chapter 2), youths’ perceptions on design, and design implications regarding how to approach the design of a specific problem, which is carbohydrate counting (Chapter 3). However, I do not see the specific design manifested in the final version of the prototype as the main contribution. Rather, I used this concrete design case and the user perspectives to yield an overall understanding about design in the intersection between mobile technology, youth, learning, and diabetes. Therefore, in this chapter I will abstract my findings to a conceptual level and, by this, answer the question: How can we conceptualise the design of mobile learning for young people living with diabetes? (RQ3). In the following, I discuss and summarise the results of the design process. Afterwards I introduce the MYLD framework, which is the result of the conceptualisation of the findings.

4.1. REFLECTIONS ON PERCEPTIONS AND DESIGN INSIGHTS

Chapter 3 presented the trajectory of the iterative participatory design process of mobile game prototypes in a diabetes summer camp. In this process, which consisted of four studies, the youths’ perceptions of mobile technology were placed in the foreground. The design trajectory was related to the abstraction model by Löwgren and Stolterman (2004) (cf. Chapter 2, Figure 2-5). Table 4–1 relates the levels of abstraction, to the youths’ perceptions, and to the design insights present in each of the three iterations.

During iteration one, in Study 1, the vision of the youth was central. In a design activity, the participants designed their own solutions for mobile technology, which allowed them to escape from the burden26, that is, inventing automatism or support to help them cope better in daily life. Understanding the emotions of the youths and respecting their feelings and challenges was a central concern of my analysis. In this way, it was possible to find design principles supporting the youths’ perspectives and keeping the learning focus. The operative image was built on this basis and manifested in two prototypes, which were explored in the second iteration.

While both prototypes, in Study 2a and Study 2b, had different approaches to learning, the central theme of the youth’s perceptions was the ambition to ease the burden of chronic illness by making learning fun and enjoyable. Consequently the

26There was a diversity of design suggestions and all expressed a wish to escape from the burden by some degree or another.


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main design insights from this iteration were about how to design games addressing learning and at the same time being fun. The idea was to package the learning with gamification elements that make the learning more enjoyable and less burdensome, in other words, “chocolate-covered broccoli”.

Table 4–1: Levels of abstraction by Löwgren and Stolterman (2004) in relation to the youths’ perceptions on design, and design insights in the design process

Camp iteration and level of abstraction

Youths’ perceptions on design Design insights

Iteration 1 – Vision (Study 1)

Try to escape: - let me be young – Identity - make me think less – Burden - make me feel connected –

Connectivity

Understanding emotions

Iteration 2 – Operative image (Study 2a, Study 2b)

Wish for packaging: - social and help functionality - supportive tools: enabling access

to learning content in daily life - increasing fun and game elements

to cover learning challenges

Chocolate-covered broccoli

Iteration 3 –Specification (Study 3)

Try out new possibilities: - to support casual learning for

individual phases, i.e. initial learning, upgrading of existing skills, repetition, and practice to overcome wrong routines

- to deliver one of many options - to motivate the user and overcome

learning barriers - to positively influence identity

building

Mind the Agency

Though, for iteration three, Study 3, the focus on “chocolate-covered broccoli” only took a minor role. Instead there was a focus on incorporating the results with implications from other perspectives (cf. Chapter 3, section 3.4.6.). This led to a more concrete specification for a stable and extended version of the prototype and learning design. This encompassed among others, new possibilities of how to adapt learning content to individual needs by the educators and integrated social learning.


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While there has been a diversity of perceptions and reactions by the youths on testing the prototype, a major theme was that they are willing to try out new possibilities to learn and thereby counter the burden instead of escaping from or covering it up. Thus, a significant insight during this evaluation was the importance of minding the agency (cf. section 3.5.5).

4.1.1. UNDERSTANDING PERCEPTIONS IN THE CONTEXT OF DESIGN

The participants’ reactions to and perceptions on mobile learning technology were influenced by the design situation, that is, the scope and artefact provided to them. Stimulated by the artefact and its functionality and fidelity, the reaction to design was different. Whereas the participants took up the role as designers and were allowed to envision their “dream” technology in the first iteration, they took up the role as testers in the last iteration, where they were requested to react to a concrete specification. The more concrete the design artefact, the less the participants tried to suggest alternative solutions and opportunities. However, I was concerned about giving space in all iterations to let them make revisions and articulate alternative paths and ideas for design.

Reflectively, the perceptions of the youths is dependent on the maturity of the artefact, but also on the youths, that is, the participants themselves and their background. Also, the context in which the artefact is used as well as time spent on use takes up an important role.

Investigating the youth’s perceptions on the prototypes at the same time revealed the experiences, challenges, and dreams and hopes of youths with diabetes. Thus, involving them in participatory design allows to look into the past, the present and the future, contributing to the understanding of youths with diabetes. This refers to what Sanders called the experience domain, allowing to learn about the participants’ memories, current experiences, and dreams for the future (2001). These reflections are important for the design of technology supporting them in their learning about and in coping with the disease.

4.1.2. REFLECTING ON DESIGN CHOICES

I want to reflect on the initial implications and design principles, which arose in iteration 1 of the design process, to reflect critically on the design trajectory and to determine to what extent the initial considerations still hold or to what extent they have to be revised after the third iteration (cf. 3.2.3.1, 3.2.5).


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4.1.2.1. Youth technology with diabetes functionality – choice of mobile technology as a platform for the design

Respecting and considering emotional themes of youths with diabetes, and not only those of their disease, became an ambition in my design process. The choice of designing for mobile technology was thereby a small but important step. When starting the research project, mobile technology for learning about diabetes or even mobile gaming was only emerging in research and had not yet reached the end-users. Designing for mobile technology contrasted with the existing traditional teaching method present at that time in the camp setting. In this way, my design addressed the youths’ world, where mobile technology and mobile gaming were already present and were on the rise.

The ambition to design games with stories, aiming to portray the world of young people living with diabetes, had been in focus in the early design process. The youths favoured the storytelling elements and characters designed in the prototypes and suggested further improvements and extensions (cf. papers III and IV). Though, I realised that integrating advanced game features would have required additional resources and qualifications not available within my research project. Therefore, design requirements addressing individual learning through scaffolding were priorities over a focus on advancing the game towards game elements. Finally, this design decision showed to have importance in allowing the youths to identify themselves with the game despite the rudimentary gaming elements.

Understanding the youths’ perspectives and challenging the medical view emerged as an important approach to addressing the emotions of the youths. The life-long learning perspective turned into the concept of casual learning when supporting learning about carbohydrate counting. Learning about carbohydrate counting is not needed all the time, rather only at specific time periods in life, such as initial learning and when refreshing skills. Sensitivity is needed for respecting the youths’ emotional burden, that is, their readiness and willingness for learning, to avoid negative emotions when introducing learning with mobile technology.

The mobile game prototypes showed potentials for effecting positive attitudes towards skills and confidence and thus contributing to the learning focus. The prototypes showed possibilities to positively affect emotions in addition to the learning focus. This included joy, enthusiasm and keen interest to play and to compete and pride of showing the tool to others. Thus, designing mobile learning technology for diabetes, even with a strong learning focus, can address a diversity of positive emotions. This is a modest attempt to overcome the imbalance between a the ubiquitous commercial use of technology targeted for young people and the limited amount of attractive technology created for youths with diabetes that they can themselves identify with.


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4.1.2.2. Lightening the load – create mobile games to transfer the clinical learning tasks into a game universe

Very early in the participatory design process, the youths articulated the burden they feel with managing and accepting the disease for their entire life and consequently the wish for technology to ease daily tasks for them. I concluded that design for young people living with diabetes means reducing their day-to-day load so that they feel more comfortable and less confronted by the disease.

With the focus on learning in my research, I intended to address this burden by empowering the youths with learning experiences in contrast to traditional learning material and teaching practices. One direction was to motivate learning through the design of learning games – the “chocolate-covered broccoli” (cf. Paper IV). The evaluation showed that such design can motivate the youths and that it can make it more fun to learn about necessities related to chronic illness, such as carbohydrate counting.

Playing the game resulted in lightening the load by, for example, increasing confidence and awareness, and different game elements caused enthusiasm for dedicating oneself to learning about diabetes, even when dealing with heavy topics like numeracy in diabetes (cf. Paper V). However, later in the design process, a strong focus on game design was given up. Instead, minding the agency, that is, addressing the youths’ individual needs and backgrounds, emerged as a central focus, where game design is only one aspect. The prototype design showed potential for lightening the youths’ load by motivating the kids through game elements as well as in particular through learning content and scenarios relevant to and adequate for the individual needs of children with diabetes.

4.1.2.3. Possibilities to connect – design collaborative learning tools supporting the co-solving of tasks to encourage sharing and discussion

Cooperation, collaboration, and sharing have been themes, which were present in all design iterations. One the one hand, I obtained this focus from social learning theory and my affiliation with the e-Learning Lab at Aalborg University. On the other hand, the involved participants called for connecting with capable peers or mates for help, guidance, sharing, and competition. I tried to address these themes in my learning designs, whereas constraints and new perspectives and findings made me navigating back and forth between the concepts of individual and collaborative learning design.

The introduction of learning technology for diabetes contained an ambition to support the teaching responsibility of parents and educators with technology. This research has shown that this ambition has limitations, particularly since learning


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about diabetes is more than learning facts, but also includes making sense of individual practices. It is still important that capable peers react to and assist the youths in their individual learning. Thus, the design of mobile learning technology must take into consideration the learning environment and be sensitive to whether the learning content and scenarios are useful for the youths.

Connecting with buddies who also have diabetes was very present, since the youth in everyday life outside the camp often feel alone with the disease. At the camp, sharing and learning from each other is an integral part of the diabetes camp philosophy and thus was articulated as a wish for learning with technology in the camp. Although, during my design process, I realised that learning from each other is often about sharing the same worries and fears, motivating each other, and adopting certain tips and tricks. In regard to the concrete learning issues, learning has shown to be a challenge.

In particular, the more complex problems dependent on one’s own practices were revealed as constraints for cooperative learning, such as calculating insulin doses based on blood glucose values. Specific tasks such as carbohydrate counting showed to be more adequate for shared learning. However, in this context different needs and practices also became obvious (cf. Study 2a, Study 2b, Study 3) and thus challenged the staging of close-to-real-life situations for successfully learning together. Additionally, finding a good match of mates for learning together was revealed as a challenge, since the youths got to know each other only during the camp. Comparing and competing within the learning design seemed to be a driving force for motivating and creating enthusiasm for learning, though risks were identified.

Designing for young people living with diabetes calls for a focus on the individuals as well as their surroundings to enable connections to others to get help, to share, to cooperate with, or to learn from. The degree of interaction with others cannot be fixed but rather must be addressed dependent on the continuously shifting demands of the individual. Thus, my approach of not fixing cooperation in the technology but rather allowing the diabetes educators to frame the learning scenario and addressing different learning styles seemed to be successfully for the context of the camp.

4.2. THE MYLD FRAMEWORK

The MYLD framework (Figure 4–1) was developed to bring together the various elements identified in the presented research. With the framework, I aimed to summarise the research with a conceptual perspective on the design of mobile learning for children and teenagers with diabetes. The four elements – Mobile technology, Learning, Youth, and Diabetes – are the core elements, which


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designers must engage with within this interdisciplinary research. Hereby, the centre of the framework is learning – the objective of the research.

Figure 4–1: The MYLD framework

Based on my empirical work, which focused specifically on the design of mobile games for youths aged 10 to 16 years addressing the carbohydrate counting problem, three main themes emerged: “emotion”, “evolution”, and “ecology”. These themes summarise the intersections and relations between the core elements mobile technology, youth, learning, and diabetes.

4.2.1. EMOTION

In the first camp iteration, “emotion” emerged as an important theme to consider when designing mobile learning for youth with diabetes (cf. 3.2.2, Paper I). The relations and in particular the contradictions between the elements of youth, diabetes, and learning became obvious and emerged henceforth in all design iterations. Hereby, the youth’s “identity” and the “burden”, which youths with diabetes feel, were identified as equally influential.

Identity development, coping, and adjustment are challenge for youth with diabetes (Luyckx et al., 2008; Oris et al., 2016). An understanding of youth with diabetes is needed, as they wish for design solutions acknowledging their identity as a youth besides their identity as a person with diabetes versus designing for sick people (cf.


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Pullin, 2009). Related to the intersection of youth and diabetes and the aspects of identity in the emotion theme, Kanstrup defines the term camouflage (2014) by referring to Wengers’ nexus of multi-memberships (2000), emphasising the need for design that is able to blend in supporting membership.

The special conditions and inner burden of youth living with diabetes have to be taken into account. The empirical work in this research showed that mobile technology has the potential to unfold the constraints at the intersection to learning. Hereby, emotions are related to motivation (Paper IV, Paper V). Although, neither mobile technology nor the direct translation of youths’ emotional expressions is a solution in of itself. Instead, it is necessary to incorporate the elements and their contradictions when trying to create a meaningful and joyful learning design. This helps youths address the burden of the disease instead of trying to escape from it. Future research can be done on designing for emotions and by taking the aspects of “lightening the load” in relation to the “burden” and “let me be young” in relation to “identity” into account.

Furthermore, understanding the youths’ emotions and their emotional reactions when facilitating design participation and when exploring and evaluating designs are important aspects to consider when designing for this target group.

4.2.2. EVOLUTION

The findings of the second and third camp iterations emphasised that the design should address the very different needs of the youths, supporting their individual learning (cf. papers III and IV). Hereby the theme “evolution”, which is placed at the intersection of diabetes and learning, can be further described through “scaffolding” and the term “casual”.

The theme “evolution” closely relates to the core element of learning, since it focuses on the development – that is, the progression – of the youths’ learning about the disease. This is in line with becoming more responsible for their diabetes and adopting self-management tasks (Schilling et al., 2002). “Scaffolding” emphasises the need to create a flexible design that is able to adapt to the individual conditions and practices of the youths. The potentials of mobile learning (vs. classroom learning and paper-based learning) can be used to design meaningful and engaging learning scenarios, which facilitate a zone of proximal development (Vygotsky, 1978) and assist the learner through scaffolding (cf. Kim & Hannafin, 2011; Wood et al., 1976). Hereby, the mobile technology is important but so are the people involved (cf. 4.2.3 connectivity).

However, the studies demonstrated that a design for a specific learning objective is not intended for continuous learning or for life-long use. Instead, the use of the mobile learning technology (focusing on specific learning aspects) is “casual”. It is


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relevant at different and for short periods of time (cf. 3.5.4.2.), helping the youths along their way. Thus, the mobile learning technology accompanies the youths and their evolution in specific phases where there is a need for learning (in contrast to tools needed on a daily basis).

Considering the aspects of “evolution” is needed in regard to understanding how to better scaffold design and frame learning to the individual practises and needs.

4.2.3. ECOLOGY

The design process identified “ecology” as a central theme for designing mobile learning for youth with diabetes with a focus on “connectivity” and “possibility”. The theme strongly relates to the definition of “information ecology” by Nardi et al. (2000), with emphasis on the relationship between people, practices, and technologies in a local environment.

The wish to connect and share emerged early in the design process (cf. 3.2.2.3, Paper II) and is summarised by “connectivity”. Aspects of connectivity were addressed in the different designs (cf. 3.3.2, Paper II, Paper IV, Paper V), contradicting certain assumptions on design for the individuals (cf. Paper I). The empirical data showed the challenges of incorporating “connectivity”, since it conflicts with very individual practices and individual learning paces. Nevertheless, it emphasised the strength of motivation and engagement through shared usage scenarios, shared learning, and support by capable peers (cf. Paper I, Paper IV). Future design has to further study how to deal with the constraints of supporting connectivity and scaffolding (as an important aspect related to evolution, cf. 4.2.2).

The term ‘possibility’ summarises the findings related to the third design iteration. The design of mobile technology at the intersection of learning expands the possibilities of solutions to choose from and thus can broaden the solutions space (cf. 3.4.5.2).

Finally, understanding and designing with attention to the ecology of use is fundamental for designers of mobile learning. Hereby it is important to introduce technology that is not isolated and focused only on the individual. Instead, it is necessary to pay attention to the interplay of new design with other technologies, people, and the context in which it should be used.

4.2.4. AN INTEGRATED FRAMEWORK FOR DESIGNERS

The need for a holistic perspective is a fundamental conclusion of this research and puts the youths’ perspective in the foreground. The intersections between “emotions”, “evolution”, and “ecology” are considered themes which designers must pay attention to.


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The MYLD framework aims to provide a holistic approach to the design of mobile learning technology for young people with diabetes by integrating cores elements and themes in an integrated model. This integrated framework forces designers to pay attention to the interplay between the core elements – how these elements are integrated into and affect each other – such as the effect of emotions on learning about diabetes, the effect of diabetes on youths’ emotions, the effect of mobile technology on youth, the effect of diabetes on the design of mobile learning, etc. According to the model, all elements are related to learning.

The MYLD framework could be used as an analytic tool in the design process, for example, to investigate and identify visions, operative images, and specifications for each of the elements and to define, in cooperation with the target group, the details related to the principles of emotions, evolution, and ecology.

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CHAPTER 5. CONCLUSIONS

This dissertation aimed to conceptualise the design of mobile learning for children and teenagers living with type-1 diabetes. The investigation was conducted as an iterative and participatory design-based process constituted on the assumption that insights into and implications for design as well as an understanding of the context arise through reflective design and through involving the target group. This thesis described this approach, the trajectory, and the findings in regard to the design of mobile learning for children and teenagers with diabetes. In the following, I summarise and reflect on the research questions, methodical issues, and future possible research directions.

5.1. RESEARCH QUESTIONS

The aim of my research was to contribute to the design of mobile learning for children and teenagers living with type-1 diabetes. Hereby, three research questions, addressing methodological (RQ1), empirical and analytical (RQ2) as well as conceptual issues (RQ3), formed the basis of my investigation.

RQ1: How can we facilitate design participation for young people living with the chronic disease of diabetes in the design of mobile learning?

User involvement of youths living with diabetes has been the approach and empirical foundation of the research. The premise was that close and intense user involvement of the target group would benefit the design. While there were various methods for how to design with and for children and teenagers, I assumed particularities for design in the diabetes context. In an iterative and participatory design process, the diabetes summer camp as a site for design participation was investigated to create a hybrid “third space” (Muller, 2007). Hereby, willingness and consent as well as maintaining participation have emerged as main issues. The peculiarities of facilitating participation with this user group, that is, the challenge of talking about their disease and putting users’ wellbeing into the foreground27, could be overcome with selected techniques fitting to this user group. The use of user-mock-ups turned out to be a valid technique in the early design process, where design materials facilitated the young participants in externalising the user perspective and emotions in regard to difficult and private health issues. Hereby, the technique has shown to evoke creativity and the articulation of inner thoughts

27Being sensitive to the fact that participation should be flexible enough to respect the constitution of the youth (short sessions, allowing interruptions to allow for required ad-hoc medical interventions, measuring blood glucose values, glucose intake or insulin injection)


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and emotional themes. However, it called for the designers’ ability to understand these expressions and emotions (cf. Paper II). How to understand articulations and how to incorporate understandings from young users with other stakeholders’ and clinical perspectives into mobile learning design is a central challenge for future research.

RQ2: How do young people living with diabetes perceive mobile learning?

This question was approached empirically and analytically in three iterations of my design process at the diabetes summer camp. Hereby, the iterations were related to the levels of abstraction by Löwgren and Stolterman (2004). The facilitated design situation – in other words, the design participation, the artefact, its functionality, and its fidelity – partly influenced the reactions and perceptions of the youths regarding mobile technology. Whereas the participants took up the role as designers and were allowed to envision their “dream” technology in the first iteration, they took up the role as testers in the last iteration, where they were requested to react according to a concrete specification.

In the first iteration (focusing on the vision), the youth articulated in a design workshop their expectations of mobile technology in terms of letting them being young, allowing them to think less, and making them feel connected. Hereby, the themes of identity, burden, and connectivity were in focus, contributing to an understanding of the youth’s challenges with the disease and their dream to “try to escape”. Consequently, understanding and respecting these emotions were considered important for finding the appropriate design implication leading to concrete prototypes. In the second iteration (focusing on the operative image), in which the youths explored two low-fidelity prototypes, the “wish to cover” the learning and in this way to ease the burden by making learning fun and enjoyable were central. Hereby, I investigated the “chocolate-covered broccoli” theme, dealing with the challenges of incorporating motivation into learning design. In the third iteration (specification), the youth’s perception on a redesigned prototype was evaluated. Involving a diverse group of youth in the camp delivered a diversity of perceptions and reactions. A major finding was that the youth are willing to take the opportunity and thereby counter the burden instead of escaping or covering it.

My design case has shown that even with rather visible learning content (“broccoli”) and few fun elements (“chocolate”), many participants’ perceptions on the mobile game (concept) were positive. While motivational elements were important, mobile learning technology fitting to their everyday practices allowing them to practise real situations plays a central role for perceiving the prototype as valuable. The prototype has shown to have potential to extend the youths’ repertoire on learning about carbohydrate counting. Moreover, it also added values other than learning, such as motivation, confidence, and identity, which were seen


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as important purposes of mobile learning technology. However, critical perceptions on the prototype were also articulated. In fact, it is important to acknowledge that such a mobile game is not relevant all the time nor is it relevant for every youth with diabetes. I stress that it is important to pay attention to the agency, that is, to the youth’s backgrounds and to their current and shifting attitudes towards their disease and learning about it. Investigating youth perceptions on technology helped to break up the initial assumption of mobile learning: that “one size fits all”. This shifted towards the position of mobile learning as being a possibility, both in relation to one of many options to learn about diabetes issues and in relation to casual use.

RQ3: How can we conceptualise the design of mobile learning for children and teenagers living with diabetes (type-1)?

The third question intended to bring the research results to a conceptual level. Based on the concrete design case, I investigated mobile technology, youth, learning, and diabetes and how they intersect. Based on my empirical study (which focused on the design of mobile games for youth aged 10 to 16 years addressing the carbohydrate counting problem), three central themes emerged: emotion, ecology, and evolution. As a contribution to future research on the design of mobile learning for young people with diabetes, I developed the MYLD framework (Mobile technology, Youth, Learning, Design, Figure 5–15–1). The framework integrates the themes with the core elements. Hereby, the themes describe the intersections and relations between the core elements: mobile technology, youth, learning, and diabetes.

Figure 5–1: The MYLD framework


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The MYLD framework delivers a systemic perspective on how the elements interact with each other and what to consider when designing within this interdisciplinary field. Moreover, the MYLD framework highlights the need for a holistic perspective in the design of mobile learning for young people with diabetes.

5.2. METHODOLOGICAL REFLECTIONS

My research was conducted as an iterative and participatory design-based process constituted on the assumption that insights into and implications for design as well as understanding of the context arise through reflective design and through involving the target group.

The iterative design process was conducted three years in a row at a summer camp. Using this selected site for data collection and design participation, I consider as a methodological strength of my research. I could contribute with the insights and challenges of facilitating design participation in a diabetes summer camp. The focus has been on youth living with diabetes, which allowed me to get an in-depth understanding of their perspective, leading to the MYLD framework. Other perspectives were considered, though not in focus. Reflectively, the cooperation with the diabetes educators should be consolidated in future research (cf. 5.4). Since I focused mainly on the design of technology for the summer camp context, I considered the integration of the parents’ perspective (through questionnaires) sufficient. However, the family perspective should be considered in depth when aiming at learning design for the everyday lives of the youth, assuring a more holistic approach, as done for example in the maXi project (Kanstrup, 2014).

My research focused foremost on qualitative data collection and analysis, since the intention was to explore in a participatory design process how to design within the intersections of mobile technology, youth, learning, and diabetes. I used a mixed methods approach, whereas I was challenged to be sensitive, reactive, and reflective in regard to how to best adopt techniques for research in the wilderness and for acknowledging special demands in the diabetes context.

In addition to the qualitative techniques, I chose to use quantitative data elements in the last camp iteration. The intention was to show the quantification of the differences that existed in the phenomena, which the qualitative data had pointed out earlier in my study. I chose to use quantitative data collection in combination with qualitative to triangulate the data towards a comprehensive understanding of youth with diabetes and the design of mobile learning (cf. Paper V).

The summative evaluation could show first indications regarding the impact on learning, confidence, motivation, and identity. The research design was not intended, nor suitable, for studying long-term impact of youth in their everyday life, nor consequently, on self-management. My findings provide the groundwork for


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future research and design, investigating the impact with a more mature prototype.

5.3. STATE-OF-THE-ART: RELATION TO CURRENT RESEARCH, DESIGN, AND PRACTICES

My data collection was conducted between 2008 and 2010. As time has passed, one could assume that my findings might have limited relevance for future research and design. I investigate in the following the extent to which my approach and findings are still in line with current research, design, and practices.

When I started my research project, studies were rare which focused on UCD or PD techniques and methods within the field of type-1 diabetes in youth (cf. Chapter 1, LeRouge & Wickramasinghe, 2013). Meanwhile, some studies were initiated with a strong focus on creative, but also tangible techniques and methods in line with the approaches I used in my project: Bowen et al. draws on the strength of popular cultural references to motivate in different workshop design activities (2013), while Tsvyatkova et al. have adapted and used design probes and collaborative storytelling (2014; 2014a, 2014b) for young people living with diabetes to externalise the youth’s struggles with and perceptions of their disease.

Within my design research I have focused on concrete learning issues. Hereby, carbohydrate counting emerged as a central challenge in practice and education for youth with diabetes. Previously, no adequate supportive tools existed which could totally replace or ease the learning of those skills. Meanwhile, diabetes technology has advanced, and innovations are available for specific self-management tasks, such as measuring, tracking, and monitoring blood glucose values (Franklin, 2016). In relation to carbohydrate counting, one might assume that technology can replace carbohydrate counting as well. The carbohydrate counting problem is still a relevant topic in diabetes education, and patients are facing difficulties (Brazeau et al., 2013; Finner, Quinn, Donovan, O’Leary, & O’Gorman, 2015; Smart et al., 2009; Spiegel et al., 2012).

Food recording seems to still be the dominant solution to address carbohydrate counting (Rusin, Arsand, & Hartvigsen, 2013) but does not replace the learning about calculating or estimating carbohydrate counting. However, recent approaches using photography, computer vision, image analysis, and augmented reality seem to have potentials to support carbohydrate counting in the future (Domhardt et al., 2015; Martin et al., 2014; Rhyner et al., 2016). Although, learning about carbohydrate counting will still be an issue for the future until the practicalities and accuracy of using such tools will completely replace the acquisition of those skills (cf. Paper V). Furthermore, the motivation to use these tools permanently and the stigmatisation of youths having diabetes might be aspects which continue to support the learning approach in carbohydrate counting.


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In line with my research and my design perspective, designing learning games for youth with diabetes have advanced, making use of better interactions and usability, Internet connection, and visual representations than on the mobile phone generation I designed for in my study. A learning game about carbohydrate counting was designed on smartphones (Bassilious et al., 2011). Two other solutions focused on a social gaming platform to support cooperation in learning (Bomark et al., 2012; Brox et al., 2012) and a serious game concept about role playing to support diabetes compliance (Friess, Kolas, & Knoch, 2014).

5.4. FUTURE RESEARCH

My research study has revealed different implications and directions for further design research within the fields of mobile technology, youth, learning, and diabetes. Hereby, I suggest the following design and research topics as particularly interesting.

Firstly, concrete design implications, which emerged during my design trajectory, could be point of departure in new design research keeping and extending the food quiz concept (cf. Chapter 3). Hereby, advancement within the field of mobile technology in recent years, such as touch screen technology and Internet connectivity, deliver a solid basis for designing increased usability, inactivity, and accessibility towards a more concrete specification and upon this evaluating specific aspects and effects of use, such as learning.

Secondly, the summer camp as a site for involving youth and other stakeholders could be point of departure in further research. My design process covered three iterations with one-year time spans in between. A more feasible and contemporary approach, incorporating short-lasting development cycles, could be used (Shore & Chromatic, 2007)). With this method it would be possible to integrate design activities for a whole design process within one camp iteration, that is, from idea to concrete specification.

Thirdly, in future research, the MYLD framework could be used as an analytic tool in the design process, for example to investigate and identify visions, images, and specifications for each element and define, in cooperation with the target group, details related to the principles of emotions, evolution, and ecology. I also imagine that the MYLD framework can be used as a participatory design tool to display and discuss with youths with diabetes, for example by developing a design game to support the framework (cf. Brandt, 2006). In general, the MYLD framework can support future research on mobile learning for young people with diabetes and invite further development and investigation of the interplay between core components and principles. Since learning is in focus, designers may use the model to examine the core elements and principle effects on learning.


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Fourthly, the diabetes educator perspective on learning design for youth with diabetes could be put in focus in future research. Within my research, the cooperation with the medical professionals was based on loose agreements, while there was tight cooperation with the youth. Design research could investigate more in depth the educators’ needs and challenges when designing and organising teaching for youth with a diversity of backgrounds and practices and how to best integrate technology. This might lead to design implications for mobile technology or mobile games, which can be better integrated into everyday teaching practice of educators. Furthermore, behavioural change theories should be applied to support the design of patient education and mobile learning (Ayling, Brierley, Johnson, Heller, & Eiser, 2015; Schwarzer, 2001). The MYLD framework could be a starting point for investigation and a basis for extending the framework by other elements or themes.

Fifthly, designing mobile technology delivers opportunities to research regarding how to support learning about diabetes at home. While I focused in the research explicitly on creating learning spaces in the camp setting, one might study the design and effect of learning scenarios outside a camp. Hereby, the MYLD framework could be used to study emotions further in terms of bridging the camp with the real world, such as by supporting connections created in the camp and combining learning tools with the concept of social networking.

5.5. LANDSCAPE OF IT SERVICES – ZOOMING IN TO LEARNING DESIGN

The PhD project was defined in and framed by the maXi project, a Danish research project (2007–2011) at Aalborg University. The goal of the maXi project was to develop concepts for IT services for everyday living in cooperation with people suffering from the chronic disease of diabetes. The vision of the project was to break the boundaries of health support with IT by putting people with diabetes and their families at the centre of interest and by moving the focus from disease and hospitals to society, everyday living, and services (Kanstrup, Bertelsen, Glasemann, & Boye, 2008).

The maXi project, which applied a participatory design approach, resulted in extending the landscape of IT services available for people with diabetes and their families. Three directions within the dimensions of medical ideals vs. everyday living and individual vs. society were suggested and placed (Figure 5–25–2): community design, inclusive design, or learning design (Kanstrup, Glasemann, &


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Nielsby, 2010). My dissertation contributed to the direction of “learning design”28 by focusing on type-129 diabetes in childhood and early adolescence30.

Figure 5–2: Placement of learning design within the landscape IT services31

Learning design is placed close to the dimension of “individual” (vs. society) and “medical ideals” (vs. everyday living). In comparison to the other two directions, the placement is valid. However, I would stress that the learning design as I have investigated it in my study has potentials to move out of the corner towards “society” and “everyday living”. My design case has shown that learning design and learning content, which are too far from everyday living, or too general, will not fit to the individual users’ needs and practices. Thus, they are most likely not to be considered as valuable.

Nevertheless, this approach can be contrary to the wish to move away from the individual dimension towards that of society. My findings have shown both potentials and challenges of facilitating shared learning between peers. Based on my research, I conclude that the learning design should be primarily individual and close to medical ideals (cf. Figure 5-2). Secondarily, it should be flexible and adaptable to get close to everyday living and society.

28The placement of learning design within this dimension will be discussed at a later point in the thesis. 29 Type-1 diabetes is a special type of diabetes mellitus requiring insulin therapy and accounts for 5 to 10% of all diagnosed cases, occurring mostly in childhood (IDF, 2013; Sabaté, 2003). 30 The maXi project focused on families with one or more family members of any age having type-1 or type-2 diabetes, while I narrowed down the target group for my project. 31 based on the model “landscape of IT services” by Kanstrup et al. (2010)


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5.6. CONCLUDING REMARKS

Within my research study, I had the motivation both to contribute to the research community and to make a difference for youth with diabetes. Being confronted with the reality of research and designing in the wild with real users and real problems, I have passed a deep learning curve full of challenges and insights. I believe that the research will make a difference for youth with diabetes by having involved them and by having externalised and communicated their perceptions and perspectives for design.

The presented research and findings are relevant for design research, contributing to design methodology and design practices within the fields of Participatory Design and Health Information Technology research. In particular, the design trajectory (Chapter 3), its focus on user participation (Chapter 2) and the MYLD framework (Chapter 4) contribute to the interdisciplinary design research at the intersections of mobile technology, youth, learning, and diabetes, considering hereby the themes emotions, evolution, and ecology.

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APPENDICES Appendix A. Materials for data collection ................................... 106 Parents’ questionnaire ........................................................................... 107 Initial children’s questionnaire ............................................................... 110 Concluding children’s questionnaire (A) ................................................ 114 Concluding children’s questionnaire (B) ................................................. 117 Initial assessment sheet ......................................................................... 120 Concluding assessment sheet ................................................................. 122 Probes ..................................................................................................... 123

Appendix B. Further ethical considerations ................................. 124 Ethical approval ...................................................................................... 124 Involving children ................................................................................... 125 Researcher role and data handling ......................................................... 125 How to use the participants’ voice ......................................................... 126


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Appendix A. Materials for data collection In camp iteration three, different techniques to evaluate perceptions of the prototype as well as on practices and skills about carbohydrate counting were used (cf. Paper V). The following presents material about the questionnaires, probes, and assessment techniques used.

APPENDIX A. MATERIALS FOR DATA COLLECTION

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PARENTS’ QUESTIONNAIRE


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109


110

INITIAL CHILDREN’S QUESTIONNAIRE

Questionnaire addressed to children and adolescents who were to test the prototype for a four-day period.


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112


113


114

CONCLUDING CHILDREN’S QUESTIONNAIRE (A)

Questionnaire addressed to children and adolescents who tested the prototype for a four-day period.


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117

CONCLUDING CHILDREN’S QUESTIONNAIRE (B)

Questionnaire addressed to children and adolescents who tested the prototype for two sessions.


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119


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INITIAL ASSESSMENT SHEET

ErmittelnderBEmitNährwerttabellen Nr._______________

WievieleGrammKohlenhydratehaben1BE?

_______GrammKohlenhydrate

ichweißnicht

DusiehstrechtseineTabellevoneinerSüßigkeitenVerpackung.

HastduschoneinmalaufsoeineTabellegeschaut,umdieBEzu

ermitteln?

Ja

Nein

1.Wonachmusstduschauen,wenndudieBE

ermittelnwillst?Kreisedasrichtigeein.

ichweißnicht

2.WievieleBEhatdasEis?

Notizen:______________________________________

Antwort:EinEishat_____BE.

ichweißnicht

3.WievieleBEhateinMüsliriegel?

Notizen:_______________________________________

Antwort:EinRiegelhat____BE.

ichweißnicht

4.IneinerTütesind6Brötchen.Alle

zusammenwiegen300Gramm.Wieviel

GrammhateinBrötchen?

Notizen:_______________________________________

________________________________________________

Antwort:EinBrötchenwiegt_______Gramm.

ichweißnicht


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5.WievieleBEhateinToastie?

1Toastiwiegt50g.

Notizen:_______________________________________

_________________________________________________

_________________________________________________

Antwort:__________BE

ichweißnicht

6.WievieleBEhaben150gPizza?

Notizen:__________________________________

___________________________________________

___________________________________________

Antwort:_______BE

ichweißnicht

7.WievieleBEsindin35gWaffeln?

Notizen:_______________________________________

________________________________________________

Antwort:35gWaffelnhaben_________BE

___________________________________________

ichweißnicht

8.WievieleBEhateinMinieis?

EinEis=26ml.

Notizen:_______________________________________

_________________________________________________

Antwort:EinEishat_______BE.

ichweißnicht


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CONCLUDING ASSESSMENT SHEET


1.WievieleBEhatdasGetränk?

250ml.

Notizen:

_________________________________________________

_________________________________________________

Antwort:__________BE

ichweißnicht

2.WievieleBEhaben27gKäsekräcker?

Notizen:

___________________________________________

___________________________________________

Antwort:_______BE

ichweißnicht


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PROBES

Template (part 1) for the postcards:

Template (part 2) for the postcards:

Example

!!!!!!!!!!

VON _____________________ !(Beschreibe*deine*Erlebnisse*mit*dem*Spiel?)* HALLO_________________________

!!!!!!

An !!meine!Eltern!!!meine!besten!Freund!!!meine!beste!Freundin (kreuz an)

An !!DOC!!!eine!Diätassistentin! (kreuz an)

An !!einen!Freund!mit!Diabetes!!!eine!Freundin!mit!Diabetes!!!einen!Jugendlichen!mit!Diabetes!!!ein!Kind!mit!Diabetes (kreuz an)


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Appendix B. Further ethical considerations In Chapter 2 I gave an account on ethical considerations, whereas I elaborate on further on ethical issues in the following.

ETHICAL APPROVAL

Conducting research within the health domain, including collecting data from people with a disease as well as introducing technology for them, often goes beyond an informed consent between researchers and involved participants. While the maXi project, which my study belonged to, was approved scientifically and ethically by a specialist on ethics of the Department of Communication at Aalborg University, I investigated additional verifications. This was because my study followed a special path, involving children as the main target group and focusing on their perspective on mobile learning.

The Danish scientific committee stated to me in a phone call conversation that there was no need to obtain an evaluation from an ethical committee, because my study is neither a clinical trial nor an intervention in a clinical sense. It would be different if the designed technology would relate to the treatment (e.g., suggest or remind about medications). Because I collected empirical data in Germany, the cultural- and country-specific differences were emphasised, which might exist between Denmark and Germany. Therefore, I sent a request and a description of my project to the competent authority, the Regional Medical Association of Brandenburg, Germany.

A legal board member of the ethical board confirmed via e-mail that my research does not require evaluation from the ethic committee. In addition, I gave my own accord on how to collect and handle the data by assuring participation agreements and following the privacy policy of confidential data. In planning this process, I received additional advice from the staff members of the summer camp management, who were also working scientifically and who were conducting their own studies during the camps.

At the beginning of 2011, I became familiar with the Ethical board of the Faculty of Humanities’ Human Research Ethics Board (HREB) at Aalborg University. This board was founded to advance ethical evaluation of projects that fall below the threshold of the Regional Ethical Committee of North Jutland and thus had no means of obtaining independent ethical review and advice before. Since a post hoc evaluation of projects was only possible until 2010, I could not get an official review. Nevertheless, the available checklists and application forms helped me in reflecting on my process and considerations towards ethics.

APPENDIX B. FURTHER ETHICAL CONSIDERATIONS

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INVOLVING CHILDREN

Guidelines on ethics admit that research is not necessarily unethical when involving children who do not directly benefit from the research (Hull, 2000). Still, I tried to provide an immediate contribution for the participants. I chose to create activities as short, as enjoyable, and as least strenuous as possible. The participants, adults as well as children, were able to get to know new approaches to learning about diabetes (cf. Paper III). Having integrated the learning scenarios and the designed prototypes into the camp settings might also pave the way for using the technology in the future in this context. I could not identify any apparent risks for children living with diabetes, parents, or diabetes experts participating in this study. I involved diabetes experts to assure quality and the correctness of the learning content integrated into the prototypes.

Involving youth in health-related research requires special provisions to protect the involved participants (Hull, 2000; Kuther & Posada, 2004). In summary, I tried to consider the ethical aspects of my research as best as possible. Even when it was challenging to be aware of the amount of considerations to fulfil ethical correctness, I think it is more unethical not to conduct research with this target group. Therefore, it should not inhibit research with this target group.

RESEARCHER ROLE AND DATA HANDLING

The fact that I acted in the camp as a staff member blurred my role as a researcher. Consequently, this double role has to be discussed from an ethical angle. Being in the camp three times for two weeks gave me the possibility to get very close to the participants and to deeply experience the camp and the children living with diabetes acting in this context. Since I was not considered as an outsider I might have gained special trust and confidence in doing my research activities, that is, talking to them and engaging them in workshops.

To find implications for design, I sought to understand how children and teenagers living with diabetes are mastering their lives with the disease and how it challenges them. Thus, I was confronted with very personal details in observations and informal conversations, which I in some situations decided not to write down. These were, for example, special family situations and confidential details not needed for my research aim. To avoid misunderstandings, I exerted myself in articulating my research/design role towards the children and the staff when.

Keeping the privacy of and handling collected private data confidentially is a duty of the researcher in studies involving participants. This includes that participants should agree to the release of identifiable information (Kvale & Brinkmann, 2008). In my study I followed the German and Danish guidelines regarding how to handle and store data in research projects (Datatilsynet, 2011; LDA, 2011). In essence, I


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assigned each participant a code. This code assures the anonymous publication of the data but also allows drawing cross relations between data gathered with different methods, at different point of time, respectively.

While all my collected data are stored and published anonymously, the collection and use of photos and videos of my participants is one issue which bothered me during my final reflections. In the field of HCI and learning, visual data are often used in publications or conference presentations to help in visualising the involved participants in different scenarios, such as using technology. This is also the case in designing within Health Information technology research and was applied in the maXi project involving Danish families as well (Kanstrup, 2014). This type of media can be a beneficial tool to tell the story and demonstrate user characteristics and interactions. I decided to use this opportunity as well and therefore collected visual material in different scenarios. I used only the data from those children whose parents had agreed to their publishing within a scientific frame and selected those pictures where participants were not focussing on the camera.

HOW TO USE THE PARTICIPANTS’ VOICE

Another ethical consideration I want to elaborate in this section is the influence the users had on the designs I produced during my PhD project. When you compare what users proposed in different phases of the design process to what I finally ended up with in design examples, they appear to differ quite a lot (see Paper II and Paper IV). At first glance, there seems to be a gap on two levels: a) having been designed as learning tools rather than as tools for everyday use and b) having focused on the learning content in the learning games rather than on the fun aspect. But when looking closer into the process, the difference is a result of an undertaken design focus than a gap.

The design was influenced by multiple sources and perspectives, including theory, other stakeholders’ perspectives, project scope, and project boundaries. The youths’ contributions were one but not the only driving force. An important aspect in this discussion was honesty and clearness towards the users. I emphasised to the participants how I wanted to integrate their perspectives into the design, that is, by asking them to show their viewpoint on design by drawing it rather than asking them to tell me what to design. To ensure user contribution, the iterative process was crucial.

Conducting three iterations three years in a row at the camp, showing the results and getting feedback on the design focus chosen, fulfilled some, but not all user needs. This study is limited in its ability to extrapolate about possible future technology for learning about diabetes. However, by pointing out implications and further or other directions, my study still took the variety of user contributions seriously.

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ISSN (online): 2246-123XISBN (online): 978-87-7112-752-2

designing mobile learning for children and teenagers living with diabetes

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