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Thanatosensitively Designed Technologies for Bereavement Support

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Thanatosensitively Designed Technologies for Bereavement Support Thanatosensitively Designed Technologies for Bereavement Support by Michael Massimi A thesis submitted in conformity with the requirements for the degree of Doctor of Philosophy Graduate Department of Computer Science University of Toronto Copyright c 2012 by Michael Massimi Abstract Thanatosensitively Designed Technologies for Bereavement Support Michael Massimi Doctor of Philosophy Graduate Department of Computer Science University of Toronto 2012 Increasingly, technology impacts how we communicate and behave following the death of a loved one. However, little is known about technology use by the bereaved. This thesis contributes to understanding this phenomenon through three linked studies. These studies establish an appreciation of how technology engages with human mortality, and proposes \thanatosensitive design" (TSD) as an approach for developing such systems. An exploratory study first examines technology use by the bereaved through a survey with follow-up interviews. Findings show that systems for inheriting data and devices are lacking, despite widespread use of technology for remembrance and communication. Using digital assets in social support is selected as a domain for further inquiry. The second study consists of focus groups with bereaved parents at two community organizations complemented by the perspectives of professional bereavement workers. Based on this fieldwork, 6 considerations concerning interpersonal communication, new ways of being, and materiality are presented. These considerations suggest that systems should permit connections with peers, support storytelling activities, and avoid tenden- cies to “fix” grief, among others. In the final study, I present Besupp - a website that permits bereaved users to en- gage in online peer-support groups. Besupp applied these design considerations and was deployed in a 10-week study. Nineteen bereaved individuals met in 3 support groups for bereaved parents, partners/spouses, and young adults. Based on system logs/data, ii questionnaires, and interviews, the study identified barriers to using digital mementos, preferences for online support systems, and issues concerning timing of use. In the discussion, I reflect on the three studies through four thematic lenses: tem- porality, materiality, identity, and research ethics/methods. I remark on how systems should consider the varying emotional needs of the bereaved over time. In the conclu- sion, I summarize and reflect on the status of TSD and identify areas for future work concerning social support for the bereaved, and computing's role at the end of life more broadly. iii Acknowledgements Completing this thesis would not have been possible without the support of my friends and family. Foremost, I'd like to thank my loving parents - Brian and Fran Massimi - for instilling in me the passion and fortitude to complete this journey, and for their unwavering compassion when times were tough. I am also indebted to my grandpar- ents - especially Nancy Georgeanni - for teaching me the value of education and self- improvement. A big thank you to my sister Angela, who has been a great friend and cheerleader throughout my adventures in graduate school. I am also extraordinarily lucky to have found friends whose support has sustained me in the day-to-day of this thesis. Simona Mindy and Christabel Jackson, thank you for always being there to deal with my ups and downs, and for sharing this amazing ride with me. I'd be lost with- out the support of Jackie Bender, Andrea Charise, Danielle Lottridge, and Mike Wu { I couldn't have found better friends with whom to share this journey through graduate school. Many thanks as well to my good friends Jeremy Birnholtz, Rob Coley, Masashi Crete-Nishihata, Spencer Heath, Nick Shim, and Joe Wenger. Of course, I owe a huge amount of gratitude to my colleagues, whose contributions have made this thesis a much stronger piece of work. I am most indebted to Ronald Baecker, my thesis supervisor, for giving me the chance to pursue a thesis topic entirely of my own choosing, for giving me numerous opportunities to grow as a researcher, and for making his guidance continually available. I'd also like to thank my committee members - Stephen Fleming, Alex Mihailidis, Abigail Sellen, and Khai Truong - for their wonderful mentorship and for giving me so many opportunities to pursue my research goals. I'd like to thank my collaborators and co-authors, who have helped me think through my thesis in new and exciting ways, and taught me a great deal about how to perform research: Andrea Charise, Jill Dimond, Dave Kirk, Chris Le Dantec, and Will Odom. I also owe a debt of gratitude to my colleagues in DGP, HCTP, and the TAGlab for creating a great environment to work in each day. Thanks to NSERC and the GRAND NCE for financial iv support. Most of all, I'd like to thank Bereaved Families of Ontario - Toronto, the COPING Centre, and all of the bereaved individuals who participated in my studies. Without their selflessness and generosity, this thesis wouldn't be possible. v Contents Abstract ii Acknowledgements iv 1 Introduction 1 1.1 Research Questions and Contributions . .2 1.2 Thesis Organization . .5 1.2.1 Publications and Prior Work . .6 2 Related Work 7 2.1 Perspectives on Bereavement . .8 2.1.1 Sociological Perspectives . .8 2.1.2 Psychological Perspectives . 14 2.2 Social Support . 18 2.2.1 Social Support in Bereavement . 19 2.3 Technology and Bereavement . 21 2.3.1 Remembrance . 22 2.3.2 Finding Support Online . 33 2.3.3 Digital Inheritance . 40 2.3.4 Towards a Broader Understanding of Technology Use by the Bereaved 41 vi 3 Opportunities for Technology in Bereavement 44 3.1 Method . 45 3.1.1 Inheriting Technology . 46 3.1.2 Using Technology to Remember . 46 3.1.3 Anticipating One's Own Death . 48 3.1.4 Recruitment . 49 3.2 Survey Results . 50 3.2.1 Respondent Demographics . 50 3.2.2 Deceased Demographics . 50 3.2.3 Inheriting Technology . 52 3.2.4 Using Technology to Remember . 52 3.2.5 Anticipating One's Own Death . 55 3.3 Discussion: Inheriting Technology . 56 3.3.1 Generational Differences in Technology Possession . 56 3.3.2 Physicality in Inheritance . 57 3.3.3 Domestic Data: Inheriting from the Home . 58 3.3.4 Inheritance and Emotion . 59 3.3.5 Discovery and Privacy: Browsing the Files of the Dead . 60 3.3.6 One Computer, Multiple Roles . 63 3.4 Discussion: Using Technology to Remember . 65 3.4.1 Remembering Together, Even when Apart . 65 3.4.2 Reconciling Digital Legacies with the Reality of Death . 67 3.4.3 Afterlifelogging . 69 3.5 Discussion: Anticipating One's Own Death . 70 3.5.1 Prepared . 71 3.5.2 Knowingly Unconcerned . 71 3.5.3 Unsure . 71 vii 3.5.4 Unaware . 72 3.6 Opportunities for Design . 72 3.7 Limitations . 74 3.8 Conclusion . 75 4 Understanding Social Support in Bereavement 76 4.1 Research Settings and Participants . 78 4.2 Design Considerations . 82 4.3 Interpersonal Communication . 82 4.3.1 Circles of Sympathy: Managing Communication Availability . 83 4.3.2 Storytelling and Narratives . 87 4.4 A New Way of Being . 90 4.4.1 Permanence and Continuity . 90 4.4.2 Finding \Something to Do" . 92 4.5 Materiality . 100 4.5.1 Heterogeneity, Sediment, and Upkeep . 100 4.5.2 Display and Control of Mourning Symbols . 103 4.6 Limitations . 104 4.7 Summary of Design Considerations . 105 4.8 Conclusion . 107 5 Besupp: Design and Deployment 109 5.1 Early Design Work and Rationale . 110 5.2 Design Considerations . 111 5.2.1 DC1: Circles of Sympathy and Communication Availability . 111 5.2.2 DC2: Storytelling and Narratives . 112 5.2.3 DC3: Permanence and Continuity . 112 5.2.4 DC4: Finding \Something to Do" . 113 viii 5.2.5 DC5: Heterogeneity, Sediment, and Upkeep . 113 5.2.6 DC6: Display and Control . 114 5.3 Research Goals and Questions . 114 5.4 System Design: Besupp . 116 5.4.1 Memory Box . 119 5.4.2 The Circle . 119 5.5 Deployment Study . 124 5.5.1 Method . 125 5.5.2 Analysis . 127 5.6 Quantitative Results . 128 5.6.1 Usage . 128 5.6.2 Questionnaires . 134 5.7 Qualitative Results: Remembrance . 134 5.7.1 Concerns with Digital Mementos . 137 5.7.2 Types of Mementos and Assets . 143 5.8 Qualitative Results: Social Support . 149 5.8.1 Venting . 149 5.8.2 Self-Editing . 150 5.8.3 Rate of Conversation . 151 5.8.4 Moderators and Structure . 152 5.8.5 Normalization . 154 5.8.6 Helping Behaviours . 154 5.9 Qualitative Results: Emergent Themes . 155 5.9.1 General Attitudes towards Technology . 156 5.9.2 Mobile Use . 159 5.9.3 Online and Offline . 159 5.9.4 Timing of the Study . 160 ix 5.10 Reflection on Design Considerations . 162 5.10.1 DC1: Circles of Sympathy and Communication Availability . 163 5.10.2 DC2: Storytelling and Narratives . 164 5.10.3 DC3: Permanence and Continuity . 165 5.10.4 DC4: Finding \Something to Do" . 165 5.10.5 DC5: Heterogeneity, Sediment, Upkeep . 166 5.10.6 DC6: Display and Control . 167 5.11 Discussion and Reflection . 168 5.12 Limitations . ..
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