Designing for those who are overlooked - Insider perspectives on care practices and cooperative work of elderly informal caregivers

Proceedings of the ACM Conference on Computer Supported Cooperative Work, CSCW

Volumn 27, Issue , 2016, Pages 787-799

  Schorch, Marén ^a   Wan, Lin ^a   Randall, David ^a   Wulf, Volker ^a  

^a UNIVERSITY OF SIEGEN   (Germany)

Author keywords

Aging society; Caregiver; Cooperation; Ethnography; Health

Indexed keywords

COMPUTER SUPPORTED COOPERATIVE WORK; HEALTH; INTERACTIVE COMPUTER SYSTEMS;

AGING SOCIETIES; CAREGIVER; COOPERATION; COOPERATIVE WORKS; CULTURAL PROBES; ETHNOGRAPHY; INFORMAL CAREGIVERS; PARTICIPANT OBSERVATIONS;

GROUPWARE;

EID: 84963571353     PISSN: None     EISSN: None     Source Type: Conference Proceeding    
DOI: 10.1145/2818048.2819999     Document Type: Conference Paper

References (70)

1. Gregory Abowd, Gillian R. Hayes, Julie A. Kientz, Lena Mamykina, and Elizabeth D. Mynatt. 2006. Challenges and Opportunities for Collaboration Technologies for Chronic Care Management. The Human Computer Interaction Consortium HCIC 2006.
2. Stinne A. Ballegaard, Thomas R. Hansen, and Moten Kyng. 2008. Healthcare in everyday life: designing healthcare services for daily life. In Proceedings CHI 2008, ACM Press, 1807-1816.
3. Susanne Bødker, Erik Grönvall. 2013. Calendars: Time coordination and overview in families and beyond. In ECSCW 2013: Proceedings of the 13th European Conference on Computer Supported Cooperative Work, Springer, London, UK, 63-81.
4. Claus Bossen, Lars Rune Christensen, Erik Grönvall, and Lasse Vestergaard. 2013. CareCoor: Augmenting the coordination of cooperative home care work. International journal of medical informatics, 82, 5: E189-e199.
5. Tone Bratteteig and Ina Wagner. 2013. Moving healthcare to the home: The work to make homecare work. ECSCW 2013: Proceedings of the 13th European Conference on Computer Supported Cooperative Work. Springer, London, UK, 143-162.
6. Lynda C. Burton, Bozena Zdaniuk, Richard Schulz, Sharon Jackson, and Calvin Hirsch. 2003. Transitions in Spousal Caregiving. The Gerontologist 43, 2: 230-241.
7. 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 - CSCW '13, ACM Press, 91-102.
8. Lars Rune Christensen and Erik Groenvall. 2011. Challenges and Opportunities for Collaborative Technologies for Home Care Work. In ECSCW 2011: Proceedings of the 12th European Conference on CSCW, Springer, London, UK, 61-80.
9. Elizabeth C. Clipp and Linda K. George. 1990. Caregiver Needs and Patterns of Social Support. Journal of Gerontology 45, 3: S102-S111.
10. Juliet C. Corbin and Anselm L. Strauss. 2015. Basics of Qualitative Research. Techniques and Procedures for Developing Grounded Theory (4th ed.). Sage.
11. Andy Crabtree, Terry Hemmings, Tom Rodden, Keith Cheverst, Karen Clarke, Guy Dewsbury, John Hughes, and Mark Rouncefield. 2003. Designing with Care: Adapting cultural probes to inform design in sensitive settings. Proceedings of the Australian Computer- Human Interaction Special Interest Group [OzCHI 2003], 4-13.
12. CMS.gov. National Health Expenditure Projections 2012-2022. http://www.cms.gov/Research-Statistics-Data-and-Systems/Statistics-Trends-and-Reports/NationalHealthExpendData/downloads/proj2012.pdf. Accessed September 2014.
13. Sunny Consolvo, Peter Roessler, Brett E. Shelton, Anthony LaMarca, Bill Schilit, and Sara Bly. 2004. Technology for care networks of elders. IEEE Pervasive Computing 3, 2: 22-29.
14. John F. Deeken, Kathryn L. Taylor, Patricia Mangan, K. Robin Yabroff, and Jane M. Ingham. 2003. Care for the caregivers: A review of self-report instruments developed to measure the burden, needs, and quality of life of informal caregivers. Journal of Pain and Symptom Management 26, 4: 922-953.
15. George Demiris. 2009. Independence and shared decision making: The role of smart home technology in empowering older adults. Conference Proceedings of the International Conference of IEEE Engineering in Medicine and Biology Society 2009, 6432-6436.
16. Andrea Docherty, Alastair Owens, Mohsen Asadi-Lari, Roland Petchey, Jacky Williams, and Yvonne H. Carter. 2008. Knowledge and information needs of informal caregivers in palliative care: A qualitative systematic review. Palliative Medicine 22, 2: 153-171.
17. Jordan Eschler, Logan Kendall, Kathleen O'Leary, Lisa M. Vizer, Paula Lozano, Jennifer B. McClure, Wanda Pratt, and James D. Ralston. 2015. Shared Calendars for Home Health Management. In Proceedings of the 18th ACM Conference on Computer Supported Cooperative Work & Social Computing, 1277-1288.
18. Federal Ministry for Family, Elderly, Women and Youth. 2010. Ageing is changing. Central Results of the German Survey on Ageing. 2010. Download at http://www.bmfsfj.de/RedaktionBMFSFJ/Broschuerenstelle/Pdf-Anlagen/Altern-im-Wandel, property=pdf, bereich=bmfsfj, sprache=de, rwb=true.pdf. (as in May 2013).
19. Federal Statistical Office for Germany. Care Statistics. Care in the Context of Care Insurance. 2013. Download at http://www.statistik-portal.de/Statistik-Portal/pflegestatistik-kreisvergleich.pdf (as in August 2014).
20. Geraldine Fitzpatrick and Gunnar Ellingsen. 2012. Review of 25 Years of CSCW Research in Healthcare: Contributions, Challenges and Future Agendas. Computer Supported Cooperative Work (CSCW) 22, 4-6: 609-665.
21. Uwe Flick. 2009. An Introduction to Qualitative Research. (4th ed.), Sage.
22. Jonathan Gabe, Michael Bury, and Mary Ann Elston. 2004. Key Concepts in Medical Sociology. Sage.
23. William Gaver, Peter Wright, Andrew Boucher, John Bowers, Mark Blythe, Nadine Jarvis, David Cameron, Tobie Kerridge, Alex Wilkie, Robert Phillips, and Peter Wright. 2011. The photostroller: supporting diverse care home residents in engaging with the world. In Proceedings CHI 2011, ACM Press, 1757-1766.
24. William Gaver, Andrew Boucher, Sarah Pennington, and Brendan Walker. 2004. Cultural Probes and the Value of Uncertainty. Interactions 11, 5: 53-56.
25. Linda K. George, Lisa P. Gwyther. 1986. Caregiver well-being: A multidimensional examination of family caregivers of demented adults. The Gerontologist 26, 253-259.
26. Barney G. Glaser and Anselm L. Strauss. 1965. Awareness of Dying. Aldine de Gruyter.
27. Barnes G. Glaser and Anselm L. Strauss. 1967. The discovery of grounded theory. Strategies for qualitative research. Aldine de Gruyter.
28. Erving Goffman. 1959. The Presentation of Self in Everyday Life. Doubleday.
29. Erving Goffman. 1961a. Asylums. Essays on the Social Situation of Mental Patients and Other Inmates. Anchor Books.
30. Erving Goffman. 1961b. Encounters: Two Studies in the Sociology of Interaction, Bobbs-Merrill.
31. Erving Goffman. 1963. Stigma. Notes on the Management of Spoiled Identity. Englewood Cliffs, N. J.: Prentice Hall, 1963.
32. Rachael Gooberman-Hill and Shah Ebrahim. 2006. Informal Care At Times Of Change In Health And Mobility: A Qualitative Study. Age And Ageing 35, 3: 261-266.
33. Trisha Greenhalgh, Henry W. W. Potts, Geoff Wong, Pippa Bark, Deborah Swinglehurst. 2009. Tensions and paradoxes in electronic patient record research: A systematic literature review using the meta-narrative method. Milbank Quarterly 87, 4: 729-788.
34. Karen Hooker, Deborah J. Monahan, Sally R. Bowman, Leslie D. Frazier, and Kim Shifren. 1998. Personality Counts for a Lot: Predictors of Mental and Physical Health of Spouse Caregivers in Two Disease Groups. Journal of Gerontology: Psychological Sciences 53B, 2: P73-P85.
35. Tejinder K. Judge, Carman Neustaedter, and Andrew F. Kurtz. 2010. The family window: The design and evaluation of a domestic media space. In Proceedings CHI 2010, ACM Press, 2361-2370.
36. Bonnie Kaplan and Kimberley D. Harris-Salamone. 2009. Health IT success and failure: Recommendations from literature and an AMIA workshop. Journal of the American Medical Informatics Association 16, 3: 291- 299.
37. Tapio Kirsi, Antti Hervonen, and Marja Jylhä. 2000. A man's gotta do what a man's gotta do: Husbands as caregivers to their demented wives: A discourse analytic approach. Journal of Aging Studies 14, 2: 153-169.
38. Tapio Kirsi, Antti Hervonen, and Marja Jylhä. 2004. Always One Step Behind: Husbands' Narratives about Taking Care of their Demented Wives. Health 8, 2: 159- 181.
39. Paula Klemm, Evelyn R. Hayes, Cynthia A. Diefenbeck, and Barry Milcarek. 2014. Online Support for Employed Informal Caregivers: Psychosocial Outcomes. Computers Informatics Nursing 32, 1: 10-20.
40. Anna Kristenssen Eckwall, Bengt Sivberg, and Ingallil Rahm Hallberg. 2007. Older Caregivers' Coping Strategies and Sense of Coherence in Relation to Quality of Life. Journal of Advanced Nursing 57: 6 NO.
41. Thomas Lehnert, Dirk Heider, Hanna Leicht, Sven Heinrich, Sandro Corrieri, Melanie Luppa, Steffi Riedel- Heller, and Hans-Helmut König. 2011. Review: health care utilization and costs of elderly persons with multiple chronic conditions. Medical Care Research and Review 68, 4: 387-420.
42. Lena Mamykina, Elizabeth Mynatt, Patricia Davidson, and Daniel Greenblatt. 2008. MAHI: investigation of social scaffolding for reflective thinking in diabetes management. In Proceedings CHI 2008, ACM Press, 477-486.
43. John A. Mariani, Andy Crabtree, Terry Hemmings, and Tom Rodden. 2003. Informing the development of calendar systems for domestic use. In Proceedings of the Eighth European Conference on Computer-Supported Cooperative Work. Kluwer Academic Publishers, 119- 138.
44. Robert K. Merton. 1957. The role-set. Problems in Social Theory. British Journal of Sociology 8, 2: 106- 120.
45. Johanna Meurer, Martin Stein, David Randall, Markus Rhode, and Volker Wulf. 2014. Social dependency and mobile autonomy - Supporting older adults' mobility with ridesharing ICT. In Proceedings CHI 2014, ACM Press, 1923-1932.
46. Margaret Morris, Jay Lundell, Eric Dishman, and Brad Needham. 2003. New perspectives on ubiquitous computing from ethnographic study of elders with cognitive decline. In UbiComp 2003: Ubiquitous Computing. Springer, 227-242.
47. Claudia Müller, Dominik Hornung, Theodor Hamm, and Volker Wulf. 2015. Practice-based Design of a Neighborhood Portal: Focusing on Elderly Tenants in a City Quarter Living Lab. In Proceedings CHI 2015, ACM Press, 2295-2304.
48. Claudia Müller, Cornelius Neufeldt, David Randall, and Volker Wulf. 2012. ICT-development in residential care settings: Sensitizing design to the life circumstances of the residents of a care home. In Proceedings of CHI 2012, ACM Press, 2639-2648.
49. Elizabeth D. Mynatt, Jim Rowan, Sarah Craighill, and Annie Jacobs. 2001. Digital family portraits: supporting peace of mind for extended family members. In Proc. CHI 2001, ACM Press, 333-340.
50. Maryam Navaie-Waliser, Penny H. Feldman, David A. Gould, Carol Levine, Alexis N. Kuerbis, and Karen Donelan. 2002. When the Caregiver Needs Care: The Plight of Vulnerable Caregivers. American Journal of Public Health 92, 409-413.
51. Carman Neustaedter, A. J. Bernheim Brush, and Saul Greenberg. 2009. The calendar is crucial: Coordination and awareness through the family calendar. ACM Transactions on Computer- Human Interaction (TOCHI), 16, 1: 1-48.
52. Leysia Palen, and Stinne Aaløkke. 2006. Of pill boxes and piano benches: "home-made" methods for managing medication. In Proceedings of the 2006 Conference on Computer Supported Cooperative Work, ACM Press, 79-88.
53. Carolyn E. Pang, Carman Neustaedter, Bernhard E. Riecke, Erick Oduor, and Serena Hillman. 2013. Technology preferences and routines for sharing health information during the treatment of a chronic illness. In Proc. CHI 2013, ACM Press, 1759-1768.
54. Alexandra Petrakou. 2007. Exploring cooperation through a binder: A context for IT tools in elderly care at home. ECSCW 2007: Proceedings of the 7th European Conference on Computer Supported Cooperative Work. Springer, London, UK, 271-290.
55. Susan Pickard, and Caroline Glendinning. 2002. Comparing and contrasting the role of family carers and nurses in the domestic health care of frail older people. Health & Social Care in the Community 10, 144-150.
56. Wanda Pratt, Kenton Unruh, Andrea Civan, and Meredith M. Skeels. 2006. Personal health information management. Communications of the ACM 49, 1, 51-55.
57. Dave Randall, Richard Harper, and Mark Rouncefield. 2007. Fieldwork for Design. Theory and Practice. Springer.
58. Dirk Sauerland, Ansgar Wübker, Sandra M. G. Zwakhalen, et al. 2014. Costs of Care for People with Dementia Just Before and After Nursing Home Placement. Primary Data From Eight European Countries. In Proc. of 10th World Congress on Health Economies in the Age of Longevity, Dublin, Ireland.
59. Richard Schulz and Scott R. Beach. 1999. Caregiving as a Risk Factor for Mortality: The Caregiver Health Effects Study. JAMA. The Journal of the American Medical Association 282, 23: 2215-2219.
60. Lucy Suchman. 1995. Making Work Visible. Communications of the ACM 38, 9: 56-64.
61. Hilda Tellioglu, Myriam Lewkowicz, Aparecido Fabiano Pinatti De Carvalho, Ivan Brešković, Marén Schorch. 2014. Collaboration and Coordination in the Context of Informal Care (CCCiC). In Proceedings of the Companion Publication of the 17th ACM Conference on Computer Supported Cooperative Work & Social Computing, ACM Press, 339-342.
62. United Nations. Statement submitted by the international federation on ageing. 14 November 2013. http://documents-ddsny.un.org/doc/UNDOC/GEN/N13/564/41/pdf/N1356441.pdfOpenElement. Accessed September 2014.
63. Stephen Uzor and Lynne Baillie. 2013. Exploring & designing tools to enhance falls rehabilitation in the home. In Proc. CHI 2013, ACM Press, 1233-1242.
64. Job Van Exel, Gjalt De Graaf, and Werner Brouwer. 2008. Give me a Break! Informal Caregiver Attitude towards Respite Care. Health Policy 88, 1: 73-87.
65. Michelle Van Ruyn, Sarah Sanders, Katharine Kahn, Courtney van Houtven, Joan Griffin, Sean Phelan, Michelle Martin, Audie Atienza, Deborah Finstad, and Julie Rowland. 2011. Objective Burden, Resources and Other Stressors Among Informal Cancer Caregivers: A hidden quality issue. Psychooncology 20, 1: 44-52.
66. John Vines, Mark Blythe, Stephen Lindsay, Paul Dunphy, Andrew Monk, and Patrick Olivier. 2012. Questionable concepts: critique as resource for designing with eighty somethings. In Proc. CHI 2012, ACM Press, 1169-1178.
67. Lin Wan, Claudia Mueller, Volker Wulf, and Dave Randall. 2014. Addressing the Subtleties in Dementia Care: Pre-study & Evaluation of a GPS Monitoring System. In Proceedings of the 32nd annual ACM conference on Human factors in computing systems - CHI 2014, ACM Press, 3987-3996.
68. Elaine Wittenberg-Lyles, Debra P. Oliver, George Demiris, and Paula Baldwin. 2010. The ACTive Intervention in Hospice Interdisciplinary Team Meetings: Exploring Family Caregiver and Hospice Team Communication. Journal of Computer-Mediated Communication 15, 3: 465-481.
69. Volker Wulf, Claudia Müller, Volkmar Pipek, David Randall, Markus Rhode, and Gunnar Stevens. 2015. Practice-Based Computing. Empirical Ground Conceptionalization Derived from Design Case Studies. In Designing Socially Embedded Technologies in the Real World, Volker Wulf, Kjeld Schmidt, and David Randall (eds.), Springer, London, 111-150.
70. Naomi Yamashita, Hideaki Kuzuoka, Keiji Hirata, and Takashi Kudo. 2013. Understanding the Conflicting Demands of Family Caregivers Caring for Depressed Family Members. In Proc. CHI 2013: Changing Perspectives, 2637-2646.