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“Citizens Too”: Safety Setting Collaboration Among Older Adults with Memory Concerns

Published:20 August 2021Publication History
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Abstract

Designing technologies that support the cybersecurity of older adults with memory concerns involves wrestling with an uncomfortable paradox between surveillance and independence and the close collaboration of couples. This research captures the interactions between older adult couples where one or both have memory concerns—a primary feature of cognitive decline—as they make decisions on how to safeguard their online activities using a Safety Setting probe we designed, and over the course of several informal interviews and a diary study. Throughout, couples demonstrated a collaborative mentality to which we apply a frame of citizenship in opensource collaboration, specifically (a) histories of participation, (b) lower barriers to participation, and (c) maintaining ongoing contribution. In this metaphor of collaborative enterprise, one partner (or member of the couple) may be the service provider and the other may be the participant, but at varying moments, they may switch roles while still maintaining a collaborative focus on preserving shared assets and freedom on the internet. We conclude with a discussion of what this service provider-contributor mentality means for empowerment through citizenship, and implications for vulnerable populations’ cybersecurity.

References

  1. I. Altman. 1975. The Environment and Social Behavior: Privacy, Personal Space, Territory, Crowding. Brooks/Cole.Google ScholarGoogle Scholar
  2. R. Bartlett and D. O'Connor. 2007. From personhood to citizenship: Broadening the lens for dementia practice and research. Journal of Aging Studies 21, 2 (Apr. 2007), 107–118. DOI:https://doi.org/10.1007/s10676-012-9286-xGoogle ScholarGoogle ScholarCross RefCross Ref
  3. R. Batchelor, A. Bobrowicz, R. Mackenzie, and A. Milne. 2012. Challenges of ethical and legal responsibilities when technologies’ uses and users change: Social networking sites, decision-making capacity and dementia. Ethics and Information Technology 14, 2 (Jun. 2012), 99–108. DOI:https://doi.org/10.1007/s10676-012-9286-x Google ScholarGoogle ScholarDigital LibraryDigital Library
  4. E. P. S. Baumer and J. R. Brubaker. 2017. Post-userism. In Proceedings of the 2017 CHI Conference on Human Factors in Computing Systems. 6291–6303. Google ScholarGoogle ScholarDigital LibraryDigital Library
  5. T. Bielsten and I. Hellström. 2017. A review of couple-centred interventions in dementia: Exploring the what and why—Part A: Dementia. 18, 7 (Nov. 2017), 2436–2449. DOI:https://doi.org/10.1177/1471301217737652Google ScholarGoogle Scholar
  6. K. Boehner, J. Vertesi, P. Sengers, and P. Dourish. 2007. How HCI interprets the probes. In Proceedings of the SIGCHI Conference on Human Factors in Computing Systems. 1077–1086. Google ScholarGoogle ScholarDigital LibraryDigital Library
  7. V. Braun and V. Clarke. 2006. Using thematic analysis in psychology. Qualitative Research in Psychology 3, 2 (2006), 77–101. DOI:https://doi.org/10.1191/1478088706qp063oaGoogle ScholarGoogle ScholarCross RefCross Ref
  8. A. Brooke and L. Raine. 2019. Key Takeaways on Americans’ Views About Privacy, Surveillance and Data-Sharing. Pew Research Center.Google ScholarGoogle Scholar
  9. A. Bruckman. 1993. Gender swapping on the internet. In Proceedings of INET’93.Google ScholarGoogle Scholar
  10. S. L. Bryant, A. Forte, and A. Bruckman. 2005. Becoming Wikipedian: Transformation of participation in a collaborative online encyclopedia. In Proceedings of the 2005 ACM International Conference on Supporting Groupwork. 1–10. Google ScholarGoogle ScholarDigital LibraryDigital Library
  11. M. Burawoy. 1998. The extended case method. Sociological Theory 16, 1 (1998), 4–33.Google ScholarGoogle ScholarCross RefCross Ref
  12. D. K. Citron and B. Wittes. 2017. The internet will not break: Denying bad Samaritans section 230 immunity. Fordham Law Review 86, 2 (2017), Article 3.Google ScholarGoogle Scholar
  13. J. Clifford and G. E. Marcus. 1986. Writing Culture: The Poetics and Politics of Ethnography: A School of American Research Advanced Seminar. University of California Press.Google ScholarGoogle Scholar
  14. P. Dourish. 2014. Reading and interpreting ethnography. In Ways of Knowing in HCI. Springer-Verlag, 1–23.Google ScholarGoogle Scholar
  15. P. Dourish. 2007. Responsibilities and Implications: Further thoughts on ethnography and design. In Proceedings of the 2007 Conference on Designing for User eXperiences. 25:2–25:16. Google ScholarGoogle ScholarDigital LibraryDigital Library
  16. T. Erickson and W. A. Kellogg. 2000. Social translucence: An approach to designing systems that support social processes. ACM Transactions of Computing-Human Interaction 7, 1 (Mar. 2000), 59–83. DOI:https://doi.org/10.1145/344949.345004 Google ScholarGoogle ScholarDigital LibraryDigital Library
  17. Facts and Figures. Retrieved 2019, from https://alz.org/alzheimers-dementia/facts-figures.Google ScholarGoogle Scholar
  18. S. Fazio, D. Pace, J. Flinner, and B. Kallmyer. 2018. The fundamentals of person-centered care for individuals with dementia. The Gerontologist 58, suppl_1 (Jan. 2018), S10–S19. DOI:https://doi.org/10.1093/geront/gnx122Google ScholarGoogle ScholarCross RefCross Ref
  19. A. Forte and C. Lampe. 2013. Defining, understanding and supporting open collaboration: Lessons from the literature. American Behavioral Scientist 57, 5 (2013), 535–547. DOI:https://doi.org/10.1177/0002764212469362Google ScholarGoogle ScholarCross RefCross Ref
  20. D. Freed, J. Palmer, D. Minchala, K. Levy, T. Ristenpart, and N. Dell. 2018. “A stalker's paradise”: How intimate partner abusers exploit technology. In Proceedings of the 2018 CHI Conference on Human Factors in Computing Systems. 1–13. Google ScholarGoogle ScholarDigital LibraryDigital Library
  21. R. S. Geiger and D. Ribes. 2010. The work of sustaining order in Wikipedia: The banning of a vandal. In Proceedings of the 2010 ACM Conference on Computer Supported Cooperative Work. 117–126. Google ScholarGoogle ScholarDigital LibraryDigital Library
  22. G. R. Hayes. 2014. Knowing by doing: Action research as an approach to HCI. In Ways of Knowing in HCI. J. S. Olson and W. A. Kellogg (Eds.), Springer, 49–68.Google ScholarGoogle Scholar
  23. G. R. Hayes. 2011. The relationship of action research to human-computer interaction. ACM Transactions on Computer-Human Interaction 18, 3 (Aug. 2011), 15:1–15:20. DOI:https://doi.org/10.1145/1993060.1993065 Google ScholarGoogle ScholarDigital LibraryDigital Library
  24. D. Heater. 2013. What is citizenship? John Wiley & Sons.Google ScholarGoogle Scholar
  25. I. Hellstrom, M. Nolan, and U. Lundh. 2007. Sustaining “couplehood”: Spouses’ strategies for living positively with dementia. Dementia 6, 3 (2007), 383–409.Google ScholarGoogle ScholarCross RefCross Ref
  26. I. Hellström, M. Nolan, and U. Lundh. 2005. “We do things together”: A case study of “couplehood” in dementia. Dementia 4, 1 (Feb. 2005), 7–22. DOI:https://doi.org/10.1177/1471301205049188Google ScholarGoogle ScholarCross RefCross Ref
  27. D. Hornung, C. Müller, I. Shklovski, T. Jakobi, and V. Wulf. 2017. Navigating relationships and boundaries: Concerns around ICT-uptake for elderly people. In Proceedings of the 2017 CHI Conference on Human Factors in Computing Systems. 7057–7069. Google ScholarGoogle ScholarDigital LibraryDigital Library
  28. A. S. Hwang, P. Jackson, A. Sixsmith, L. Nygård, A. Astell, K. N. Truong, and A. Mihailidis. 2020. Exploring how persons with dementia and care couples collaboratively appropriate information and communication technologies. ACM Transactions on Computer-Human Interaction 27, 6 (Nov. 2020), 46:1–46:38. DOI:https://doi.org/10.1145/3389377 Google ScholarGoogle ScholarDigital LibraryDigital Library
  29. S. E. Igo. 2018. The Known Citizen: A History of Privacy in Modern America. Harvard University Press.Google ScholarGoogle Scholar
  30. M. S. Jørgensen, F. K. Nissen, J. Paay, J. Kjeldskov, and M. B. Skov. 2016. Monitoring children's physical activity and sleep: A study of surveillance and information disclosure. In Proceedings of the 28th Australian Conference on Computer-Human Interaction. 50–58. Google ScholarGoogle ScholarDigital LibraryDigital Library
  31. A. Lazar. 2014. Using technology to increase meaningful engagement in a memory care unit. In Proceedings of the 18th International Conference on Supporting Group Work. 255–257. Google ScholarGoogle ScholarDigital LibraryDigital Library
  32. A. Lazar, C. Edasis, and A. M. Piper. 2017. A critical lens on dementia and design in HCI. In Proceedings of the 2017 CHI Conference on Human Factors in Computing Systems. 2175–2188. Google ScholarGoogle ScholarDigital LibraryDigital Library
  33. A. Lazar, C. Edasis, and A. M. Piper. 2017. Supporting people with dementia in digital social sharing. In Proceedings of the 2017 CHI Conference on Human Factors in Computing Systems. 2149–2162. Google ScholarGoogle ScholarDigital LibraryDigital Library
  34. G. Madjaroff and H. Mentis. 2017. Narratives of older adults with mild cognitive impairment and their caregivers. In Proceedings of the 19th International ACM SIGACCESS Conference on Computers and Accessibility. 140–149. Google ScholarGoogle ScholarDigital LibraryDigital Library
  35. D. Mahoney, R. Purtilo, F. Webbe, M. Alwan, A. Bharucha, T. Adlam, H. Jimison, B. Turner, and S. Becker. 2007. In-home monitoring of persons with dementia: Ethical guidelines for technology research and development. Alzheimer's & Dementia: The Journal of the Alzheimer's Association 3, 3 (Aug. 2007), 217–226. DOI:https://doi.org/10.1016/j.jalz.2007.04.388Google ScholarGoogle ScholarCross RefCross Ref
  36. A. Marwick and boyd danah. 2010. I tweet honestly, I tweet passionately: Twitter users, context collapse, and the imagined audience. New Media & Society 13, 1 (2010), 114-133. DOI:https://doi.org/10.1177/1461444810365313Google ScholarGoogle ScholarCross RefCross Ref
  37. D. W. McDonald, S. Gokhman, and M. Zachry. 2012. Building for social translucence: A domain analysis and prototype system. In Proceedings of the ACM 2012 Conference on Computer Supported Cooperative Work. 637–646. Google ScholarGoogle ScholarDigital LibraryDigital Library
  38. N. McDonald, A. Larsen, A. Battisti, G. Madjaroff, A. Massey, and H. Mentis. 2020. Realizing choice: Online safeguards for couples adapting to cognitive challenges. In Proceedings of the 16th Symposium on Usable Privacy and Security (SOUPS’20). 99–110.Google ScholarGoogle Scholar
  39. N. McDonald and H. M. Mentis. 2021. Building for “We”: Safety settings for couples with memory concerns. In Proceedings of the ACM SIGCHI Conference on Human Factors in Computing Systems. Google ScholarGoogle ScholarDigital LibraryDigital Library
  40. H. M. Mentis, G. Madjaroff, A. Massey, and Z. Trendafilova. 2020. The illusion of choice in discussing cybersecurity safeguards between older adults with mild cognitive impairment and their caregivers. In Proceedings of the ACM Conference on Computer-Supported Cooperative Work & Social Computing. Google ScholarGoogle ScholarDigital LibraryDigital Library
  41. H. M. Mentis, G. Madjaroff, and A. K. Massey. 2019. Upside and downside risk in online security for older adults with mild cognitive impairment. In Proceedings of the 2019 CHI Conference on Human Factors in Computing Systems. 343:1–343:13. Google ScholarGoogle ScholarDigital LibraryDigital Library
  42. Mild Cognitive Impairment—Symptoms and Causes. Retrieved 2019, from https://www.mayoclinic.org/diseases-conditions/mild-cognitive-impairment/symptoms-causes/syc-20354578.Google ScholarGoogle Scholar
  43. H. Nissenbaum. 2004. Privacy as contextual integrity. Washington Law Review 79, 1 (2004), 101–139.Google ScholarGoogle Scholar
  44. L. Palen and P. Dourish. 2003. Unpacking “privacy” for a networked world. In Proceedings of the SIGCHI Conference on Human Factors in Computing Systems. 129–136. Google ScholarGoogle ScholarDigital LibraryDigital Library
  45. A. M. Piper, R. Cornejo, L. Hurwitz, and C. Unumb. 2016. Technological caregiving: Supporting online activity for adults with cognitive impairments. In Proceedings of the 2016 CHI Conference on Human Factors in Computing Systems (CHI’16). 5311–5323. Google ScholarGoogle ScholarDigital LibraryDigital Library
  46. Y. Rogers. 1997. Reconfiguring the social scientist: Shifting from telling designers what to do to getting more involved. In Social Science, Technical Systems, and Cooperative Work: Beyond the Great Divide. Psychology Press.Google ScholarGoogle Scholar
  47. J. Ruby (Ed.). 1981. A Crack in the Mirror: Reflexive Perspectives in Anthropology. University of Pennsylvania Press.Google ScholarGoogle Scholar
  48. P. S. Sachdev et al. 2015. The Prevalence of Mild Cognitive Impairment in Diverse Geographical and Ethnocultural Regions: The COSMIC Collaboration. PLoS ONE 10, 11 (Nov. 2015). DOI:https://doi.org/10.1371/journal.pone.0142388Google ScholarGoogle Scholar
  49. A. Schutz. 1967. The Phenomenology of the Social World. Northwestern University Press.Google ScholarGoogle Scholar
  50. S. L. Star. 1999. The ethnography of infrastructure. American Behavioral Scientist 43, 3 (Nov. 1999), 377–391. DOI:https://doi.org/10.1177/00027649921955326Google ScholarGoogle ScholarCross RefCross Ref
  51. L. A. Suchman. 1987. Plans and Situated Actions: The Problem of Human-Computer Communication. Cambridge University Press. Google ScholarGoogle ScholarDigital LibraryDigital Library
  52. B. Tejada-Vera. 2013. Mortality from Alzheimer's disease in the United States: Data for 2000 and 2010. NCHS Data Brief 116 (Mar. 2013), 1–8.Google ScholarGoogle Scholar
  53. Christopher Parsons, Adam Molnar, Jakub Dalek, Jeffrey Knockel, Miles Kenyon, Bennett Haselton, Cynthia Khoo, and Ron Deibert. 2019. The Predator in Your Pocket: A Multidisciplinary Assessment of the Stalkerware Application Industry. Retrieved 2019, from https://citizenlab.ca/2019/06/the-predator-in-your-pocket-a-multidisciplinary-assessment-of-the-stalkerware-application-industry/.Google ScholarGoogle Scholar
  54. S. Turkle. 1997. Life on the Screen: Identity in the Age of the Internet. Simon & Schuster. Google ScholarGoogle ScholarDigital LibraryDigital Library
  55. D. Unbehaun, K. Aal, R. Wieching, V. Wulf, D. D. Vaziri, S. Jahnke, and B. Wulf. 2019. Development of an ICT-based training system for people with dementia. In Proceedings of Companion Publication of the 2019 on Designing Interactive Systems Conference 2019 Companion. 65–68. Google ScholarGoogle ScholarDigital LibraryDigital Library
  56. J. Vines, G. Pritchard, P. Wright, P. Olivier, and K. Brittain. 2015. An age-old problem: Examining the discourses of ageing in HCI and strategies for future research. ACM Transactions on Computer-Human Interaction 22, 1 (Feb. 2015), 2:1–2:27. DOI:https://doi.org/10.1145/2696867 Google ScholarGoogle ScholarDigital LibraryDigital Library
  57. A. F. Westin. 1967. Privacy and Freedom. Atheneum.Google ScholarGoogle Scholar
  58. What Is Mild Cognitive Impairment? Retrieved 2019, from https://www.nia.nih.gov/health/what-mild-cognitive-impairment.Google ScholarGoogle Scholar
  59. P. Wisniewski, A. K. Ghosh, H. Xu, M. B. Rosson, and J. M. Carroll. 2017. Parental control vs. teen self-regulation: Is there a middle ground for mobile online safety? In Proceedings of the 2017 ACM Conference on Computer Supported Cooperative Work and Social Computing. 51–69. Google ScholarGoogle ScholarDigital LibraryDigital Library
  60. J. Zimmerman and J. Forlizzi. 2014. Research through design in HCI. In Ways of Knowing in HCI. J. S. Olson and W. A. Kellogg (Eds.), Springer, 167–189.Google ScholarGoogle Scholar
  61. S. Zuboff. 2019. The Age of Surveillance Capitalism: The Fight for a Human Future at the New Frontier of Power. PublicAffairs. Google ScholarGoogle ScholarDigital LibraryDigital Library

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    • Published in

      cover image ACM Transactions on Computer-Human Interaction
      ACM Transactions on Computer-Human Interaction  Volume 28, Issue 5
      October 2021
      308 pages
      ISSN:1073-0516
      EISSN:1557-7325
      DOI:10.1145/3481685
      Issue’s Table of Contents

      Copyright © 2021 Association for Computing Machinery.

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      Publication History

      • Published: 20 August 2021
      • Revised: 1 May 2021
      • Accepted: 1 May 2021
      • Received: 1 December 2020
      Published in tochi Volume 28, Issue 5

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