skip to main content
10.1145/2858036.2858260acmconferencesArticle/Chapter ViewAbstractPublication PageschiConference Proceedingsconference-collections
research-article
Honorable Mention

Technological Caregiving: Supporting Online Activity for Adults with Cognitive Impairments

Published:07 May 2016Publication History

ABSTRACT

With much of the population now online, the field of HCI faces new and pressing issues of how to help people sustain online activity throughout their lives, including through periods of disability. The onset of cognitive impairment later in life affects whether and how individuals are able to stay connected online and manage their digital information. While caregivers play a critical role in the offline lives of adults with cognitive impairments, less is known about how they support and enable online interaction. Using a constructivist grounded theory approach, data from focus groups with caregivers of adults with cognitive impairments reveal four forms of cooperative work caregivers perform in the context of supporting online activity. We find that staying active online is a way of empowering and engaging adults with cognitive impairments, yet this introduces new forms of risk, surrogacy, and cooperative technology use to the already demanding work of caregiving.

References

  1. Alzheimer's Association and National Alliance for Caregiving. 2004. Families care?: Alzheimer's caregiving in the USA. Retrieved September 1, 2015 from https://www.alz.org/national/documents/report_familie scare.pdfGoogle ScholarGoogle Scholar
  2. Tawfiq Ammari, Priya Kumar, Cliff Lampe, and Sarita Schoenebeck. 2015. Managing Children's Online Identities: How Parents Decide What to Disclose About Their Children Online. Proc. of CHI '15, ACM, 1895-1904. http://doi.org/10.1145/2702123.2702325 Google ScholarGoogle ScholarDigital LibraryDigital Library
  3. Rachel Batchelor, Ania Bobrowicz, Robin Mackenzie, and Alisoun 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: 99-108. http://doi.org/10.1007/s10676-012--9286-x Google ScholarGoogle ScholarDigital LibraryDigital Library
  4. Jed R. Brubaker, Lynn S. Dombrowski, Anita M. Gilbert, Nafiri Kusumakaulika, and Gillian R. Hayes. 2014. Stewarding a legacy: responsibilities and relationships in the management of post-mortem data. Proceedings of the SIGCHI Conference on Human Factors in Computing Systems, ACM Press, 4157- 4166. http://doi.org/10.1145/2556288.2557059 Google ScholarGoogle ScholarDigital LibraryDigital Library
  5. Jed R. Brubaker, Gillian R. Hayes, and Paul Dourish. 2013. Beyond the Grave: Facebook as a Site for the Expansion of Death and Mourning. The Information Society 29, 3: 152-163. http://doi.org/10.1080/01972243.2013.777300 Google ScholarGoogle ScholarDigital LibraryDigital Library
  6. Jed R. Brubaker and Gillian R. Hayes. 2011. "We will never forget you { online }": An Empirical Investigation of Post-mortem MySpace Comments. Proceedings of the ACM 2011 conference on Computer supported cooperative work, 123-132. http://doi.org/10.1145/1958824.1958843 Google ScholarGoogle ScholarDigital LibraryDigital Library
  7. Kathy Charmaz. 2006. Constructing grounded theory: a practical guide through qualitative analysis. SAGE Publications. http://doi.org/10.1016/j.lisr.2007.11.003Google ScholarGoogle Scholar
  8. Kathy Charmaz. 2013. Constructionism and the Grounded Theory Method. In Handbook of Constructionist Research, James A. Holstein and Jaber F. Gubrium (eds.). Guilford Publications, 832.Google ScholarGoogle Scholar
  9. Yunan Chen, Victor Ngo, and Sun Young Park. 2013. Caring for caregivers: Designing for integrality. Proceedings of the 2013 conference on Computer supported cooperative work, 91-102. http://doi.org/10.1145/2441776.2441789 Google ScholarGoogle ScholarDigital LibraryDigital Library
  10. Teresa Chiu and Michael Massimi. 2006. A digital support device designed to help family caregivers coordinate, communicate and plan the care of people with brain injury. AMIA Annu Symp Proc: 884.Google ScholarGoogle Scholar
  11. Elizabeth C. Clipp, Michael J. Moore, and Linda K. George. 1996. The content and properties of the Caregiver Activities Time Survey (CATS): An outcome measure for use in clinical trial research on Alzheimer's disease. American Journal of Alzheimer's Disease and Other Dementias 11, 6: 3-9. http://doi.org/10.1177/153331759601100602Google ScholarGoogle ScholarCross RefCross Ref
  12. Raymundo Cornejo, Daniel Hernández, Jesús Favela, Mónica Tentori, and Sergio Ochoa. 2012. Persuading older adults to socialize and exercise through ambient games. 6th International Conference on Pervasive Computing Technologies for Healthcare (PervasiveHealth), 2012, 215-218.Google ScholarGoogle ScholarCross RefCross Ref
  13. Shelia R. Cotten, George Ford, Sherry Ford, and Timothy M. Hale. 2012. Internet use and depression among older adults. Computers in Human Behavior 28, 2: 496-499. http://doi.org/10.1016/j.chb.2011.10.021 Google ScholarGoogle ScholarDigital LibraryDigital Library
  14. Kenneth E. Covinsky, Robert Newcomer, Patrick Fox, et al. 2003. Patient and caregiver characteristics associated with depression in caregivers of patients with dementia. Journal of General Internal Medicine 18, 12: 1006-1014. http://doi.org/10.1111/j.15251497.2003.30103.xGoogle ScholarGoogle ScholarCross RefCross Ref
  15. Serge Egelman, A.J. Bernheim Brush, and Kori M. Inkpen. 2008. Family accounts: a new paradigm for user accounts within the home environment. Proceedings of the 2008 ACM conference on Computer supported cooperative work, ACM Press, 669-678. http://doi.org/10.1145/1460563.1460666 Google ScholarGoogle ScholarDigital LibraryDigital Library
  16. Elizabeth H. Ehleringer and Si Jung Kim. 2013. The wearable lullaby: improving sleep quality of caregivers of dementia patients. CHI '13 Extended Abstracts on Human Factors in Computing Systems, ACM Press, 409-414. http://doi.org/10.1145/2468356.2468429 Google ScholarGoogle ScholarDigital LibraryDigital Library
  17. Family Caregiver Alliance. 2012. Selected Caregiver Statistics. Retrieved September 10, 2015 from https://caregiver.org/selected-caregiver-statisticsGoogle ScholarGoogle Scholar
  18. Robert Douglas Ferguson, Michael Massimi, Emily Anne Crist, and Karyn Anne Moffatt. 2014. Craving, Creating, and Constructing Comfort: Insights and Opportunities for Technology in Hospice. Proceedings of the 17th ACM Conference on Computer Supported Cooperative Work & Social Computing, ACM, 1479- 1490. http://doi.org/10.1145/2531602.2531631 Google ScholarGoogle ScholarDigital LibraryDigital Library
  19. Georgetown University. 2005. How Do Family Caregivers Fare? A Closer Look at Their Experiences. Washington, D.C. Retrieved September 1, 2015 from http://hpi.georgetown.edu/agingsociety/pubhtml/caregi ver3/caregiver3.htmlGoogle ScholarGoogle Scholar
  20. Mary Jo Gibson and Ari Houser. 2007. Valuing the invaluable: a new look at the economic value of family caregiving. Issue Brief (Public Policy Institute (American Association of Retired Persons)), IB82: 1- 12.Google ScholarGoogle Scholar
  21. Muriel R Gillick. Medical decision-making for the unbefriended nursing home resident. Journal of ethics, law, and aging 1, 2: 87-92.Google ScholarGoogle Scholar
  22. Jacqueline J. Hinckley, Amy Hasselkus, and Ellayne Ganzfried. 2013. What People Living With Aphasia Think About the Availability of Aphasia Resources. American Journal of Speech-Language Pathology 22, 2: S310. http://doi.org/10.1044/1058-0360(2013/120090)Google ScholarGoogle ScholarCross RefCross Ref
  23. Kristine Holbø, Silje Bøthun, and Yngve Dahl. 2013. Safe Walking Technology for People with Dementia: What Do They Want? Proceedings of the 15th International ACM SIGACCESS Conference on Computers and Accessibility, 1-8. http://doi.org/10.1145/2513383.2513434 Google ScholarGoogle ScholarDigital LibraryDigital Library
  24. Yoram M Kalman, Kathleen Geraghty, Cynthia K Thompson, and Darren Gergle. 2012. Detecting Linguistic HCI Markers in an Online Aphasia Support Group. Proceedings of the 14th International ACM SIGACCESS Conference on Computers and Accessibility, ACM, 65-70. http://doi.org/10.1145/2384916.2384928 Google ScholarGoogle ScholarDigital LibraryDigital Library
  25. Janice K Kiecolt-Glaser, Kristopher J Preacher, Robert C MacCallum, Cathie Atkinson, William B Malarkey, and Ronald Glaser. 2003. Chronic stress and agerelated increases in the proinflammatory cytokine IL-6. Proceedings of the National Academy of Sciences of the USA of America 100, 15: 9090-9095. http://doi.org/10.1073/pnas.1531903100Google ScholarGoogle ScholarCross RefCross Ref
  26. Yoshinori Kobayashi, Yuki Kinpara, Erii Takano, Yoshinori Kuno, Keiichi Yamazaki, and Akiko Yamazaki. 2011. A wheelchair which can automatically move alongside a caregiver. Proceedings of the 6th international conference on Human-robot interaction - HRI '11, ACM Press, 407-408. http://doi.org/10.1145/1957656.1957805 Google ScholarGoogle ScholarDigital LibraryDigital Library
  27. Richard A. Krueger. 1994. Focus groups: A practical guide for applied research. SAGE Publications.Google ScholarGoogle Scholar
  28. Airi Lampinen, Vilma Lehtinen, Asko Lehmuskallio, and Sakari Tamminen. 2011. We're in it together: interpersonal management of disclosure in social network services. Proceedings of the SIGCHI Conference on Human Factors in Computing Systems, ACM Press, 3217-3226. http://doi.org/10.1145/1978942.1979420 Google ScholarGoogle ScholarDigital LibraryDigital Library
  29. Steve Lauriks, Annika Reinersmann, Henriëtte Gerald Van der Roest, et al. 2007. Review of ICT-based services for identified unmet needs in people with dementia. Ageing Research Reviews 6, 3: 223-246. http://doi.org/10.1016/j.arr.2007.07.002Google ScholarGoogle ScholarCross RefCross Ref
  30. Leslie S. Liu, Sen H. Hirano, Monica Tentori, et al. 2011. Improving communication and social support for caregivers of high-risk infants through mobile technologies. Proceedings of the ACM 2011 conference on Computer supported cooperative work: 475-484. http://doi.org/10.1145/1958824.1958897 Google ScholarGoogle ScholarDigital LibraryDigital Library
  31. Michael Massimi and Ronald M. Baecker. 2010. A Death in the Family: Opportunities for Designing Technologies for the Bereaved. Proceedings of the SIGCHI Conference on Human Factors in Computing Systems, 1821-1830. http://doi.org/10.1145/1753326.1753600 Google ScholarGoogle ScholarDigital LibraryDigital Library
  32. Rhonda J. V. Montgomery, Judith G. Gonyea, and Nancy R. Hooyman. 1985. Caregiving and the experience of subjective and objective burden. Family Relations 34, 1: 19-26.Google ScholarGoogle ScholarCross RefCross Ref
  33. National Alliance for Caregiving and American Association of Retired Persons. 2009. Caregiving in the U.S. 2009. assets.aarp.org. Retrieved from http://assets.aarp.org/rgcenter/il/caregiving_09_fr.pdfGoogle ScholarGoogle Scholar
  34. n papers2://publication/uuid/F95CD001-E1F8--4FDB87B3--41477D77C8B5Google ScholarGoogle Scholar
  35. René F. Navarro and Jesús Favela. 2011. Usability assessment of a pervasive system to assist caregivers in dealing with repetitive behaviors of patients with dementia. Proceedings of the 4th International Conference on PErvasive Technologies Related to Assistive Environments, ACM Press, 1-8. http://doi.org/10.1145/2141622.2141656 Google ScholarGoogle ScholarDigital LibraryDigital Library
  36. Jarred Pennington and Tess Knight. 2008. Staying Connected: The Lived Experiences of Volunteers and Older Adults. Ageing International 32, 4: 298-311. http://doi.org/10.1007/s12126-008--9020--5Google ScholarGoogle ScholarCross RefCross Ref
  37. Sandra Petronio and Irwin Altman. 2002. Boundaries of Privacy: Dialectics of Disclosure. SUNY Press.Google ScholarGoogle Scholar
  38. D K Publishing. 2013. Caregiver's Handbook. Penguin.Google ScholarGoogle Scholar
  39. Robin Pugsley. 1988. Guidelines on the Termination of Life Sustaining Treatment and Care of the Dying. Journal of Medical Ethics 14, 4: 212. Retrieved from http://www.ncbi.nlm.nih.gov/pmc/articles/PMC137558 7/Google ScholarGoogle ScholarCross RefCross Ref
  40. Richard Schulz and Scott R. Beach. 1999. Caregiving as a Risk Factor for Mortality. JAMA 282, 23: 2215. http://doi.org/10.1001/jama.282.23.2215Google ScholarGoogle ScholarCross RefCross Ref
  41. Richard Schulz, Alison T. O'Brien, Jamila Bookwala, and Kathy Fleissner. 1995. Psychiatric and Physical Morbidity Effects of Dementia Caregiving: Prevalence, Correlates, and Causes. The Gerontologist 35, 6: 771--791. http://doi.org/10.1093/geront/35.6.771Google ScholarGoogle Scholar
  42. Masahiro Shiomi, Takamasa Iio, Koji Kamei, Chandraprakash Sharma, and Norihiro Hagita. 2014. User-friendly autonomous wheelchair for elderly care using ubiquitous network robot platform. Proceedings of the second international conference on Humanagent interaction, ACM Press, 17-22. http://doi.org/10.1145/2658861.2658873 Google ScholarGoogle ScholarDigital LibraryDigital Library
  43. Katie A. Siek, Danish U. Khan, Stephen E. Ross, Leah M. Haverhals, Jane Meyers, and Steven R. Cali. 2011. Designing a personal health application for older adults to manage medications: A comprehensive case study. Journal of Medical Systems, 1099-1121. http://doi.org/10.1007/s10916-011--9719--9 Google ScholarGoogle ScholarDigital LibraryDigital Library
  44. Meredith M. Skeels, Kenton T. Unruh, Christopher Powell, and Wanda Pratt. 2010. Catalyzing social support for breast cancer patients. Proceedings of the 28th international conference on Human factors in computing systems - CHI '10, ACM Press, 173. http://doi.org/10.1145/1753326.1753353 Google ScholarGoogle ScholarDigital LibraryDigital Library
  45. Aaron Smith. 2014. Older Adults and Technology Use: Adoption is increasing but many seniors remain isolated from digital life. Pew Research Center.Google ScholarGoogle Scholar
  46. Anselm L. Strauss. 1985. Social Organization of Medical Work. University of Chicago Press.Google ScholarGoogle Scholar
  47. Sharon Tennstedt. 1999. Family Caregiving in an Aging Society. Aging Symposium Longevity in the New American Century: 14-25.Google ScholarGoogle Scholar
  48. Lin Wan, Claudia Müller, Volker Wulf, and David William Randall. 2014. Addressing the subtleties in dementia care: pre-study & evaluation of a GPS monitoring system. Proceedings of the SIGCHI Conference on Human Factors in Computing Systems, ACM Press, 3987-3996. http://doi.org/10.1145/2556288.2557307 Google ScholarGoogle ScholarDigital LibraryDigital Library

Index Terms

  1. Technological Caregiving: Supporting Online Activity for Adults with Cognitive Impairments

    Recommendations

    Comments

    Login options

    Check if you have access through your login credentials or your institution to get full access on this article.

    Sign in
    • Published in

      cover image ACM Conferences
      CHI '16: Proceedings of the 2016 CHI Conference on Human Factors in Computing Systems
      May 2016
      6108 pages
      ISBN:9781450333627
      DOI:10.1145/2858036

      Copyright © 2016 ACM

      Permission to make digital or hard copies of all or part of this work for personal or classroom use is granted without fee provided that copies are not made or distributed for profit or commercial advantage and that copies bear this notice and the full citation on the first page. Copyrights for components of this work owned by others than the author(s) must be honored. Abstracting with credit is permitted. To copy otherwise, or republish, to post on servers or to redistribute to lists, requires prior specific permission and/or a fee. Request permissions from [email protected].

      Publisher

      Association for Computing Machinery

      New York, NY, United States

      Publication History

      • Published: 7 May 2016

      Permissions

      Request permissions about this article.

      Request Permissions

      Check for updates

      Qualifiers

      • research-article

      Acceptance Rates

      CHI '16 Paper Acceptance Rate565of2,435submissions,23%Overall Acceptance Rate6,199of26,314submissions,24%

    PDF Format

    View or Download as a PDF file.

    PDF

    eReader

    View online with eReader.

    eReader