Awareness and handoffs in home care: coordination among informal caregivers

References

• Abowd, G., G. R. Hayes, J. Kientz, L. Mamykina, and E. Mynatt. 2006. “Challenges and Opportunities for Collaboration Technologies for Chronic Care Management.” In Proceedings of Human Computer Interaction Consortium 2006, 1–13.
   Google Scholar
• Albanese, R., and D. Van Fleet. 1985. “Rational Behavior in Groups: The Free-riding Tendency.” The Academy of Management Review 10 (2): 244–255.
   Web of Science ®Google Scholar
• Alrashed, A. M. 2017. “Illustration of Informal Caregiving Within Saudi Society: Demography, Scope of Care and Enabling Arrangements.” Scandinavian Journal of Caring Sciences 31: 263–272. doi: 10.1111/scs.12339
   PubMed Web of Science ®Google Scholar
• Ambrosi, E., C. Biavati, A. Guarnier, P. Barelli, P. Zambiasi, E. Allegrini, L. Bazoli, et al. 2017. “Factors Affecting In-hospital Informal Caregiving as Decided by Families: Findings from a Longitudinal Study Conducted in Acute Medical Units.” Scandinavian Journal of Caring Sciences 31: 85–95. doi: 10.1111/scs.12321
   PubMed Web of Science ®Google Scholar
• American Cancer Society 2016. “Anxiety, Fear, and Depression: Having Cancer Affects Your Emotional Health.” Accessed May 30, 2017. https://www.cancer.org/treatment/treatments-and-side-effects/emotional-side-effects/anxiety-fear-depression.html
   Google Scholar
• Bardram, J., and C. Bossen. 2005. “Mobility Work: The Spatial Dimension of Collaboration at a Hospital.” Journal of Computer Supported Cooperative Work, ACM Press 14 (2): 131–160. doi: 10.1007/s10606-005-0989-y
   Google Scholar
• Benham-Hutchins, M. M., and J. A. Effken. 2010. “Multi-professional Patterns and Methods of Communication During Patient Handoffs.” International Journal of Medical Informatics 2010, 79 (4): 252–267. doi: 10.1016/j.ijmedinf.2009.12.005
   PubMed Web of Science ®Google Scholar
• Bertelsen, O., and S. Bodker. 2001. “Cooperation in Massively Distributed Information Spaces.” In Proceedings of the Seventh European Conference on Computer-supported Cooperative Work, edited by W. Prinz, M. Jarke, Y. Rogers, K. Schmidt, and V. Wulf, 1–17. Bonn, Germany: Kluwer.
   Google Scholar
• Bodenheimer, T. 2008. “Coordinating Care – A Perilous Journey Through the Health Care System.” The New England Journal of Medicine 358 (10): 1064–1071. doi: 10.1056/NEJMhpr0706165
   PubMed Web of Science ®Google Scholar
• Bossen, C., L. R. Christensen, E. Grönvall, and L. S. Vestergaard. 2013. “CareCoor: Augmenting the Coordination of Cooperative Home Care Work.” International Journal of Medical Informatics 82 (5): e189–e199. doi: 10.1016/j.ijmedinf.2012.10.005
   PubMed Web of Science ®Google Scholar
• Bratteteig, T., and I. Wagner. 2013. “Moving Healthcare to the Home: The Work to Make Homecare Work.” In Proceedings of the 13th European Conference on Computer Supported Cooperative Work, 143–162.
   Google Scholar
• Brennan, P. F., S. Downs, and G. Casper. 2010. “Project HealthDesign: Rethinking the Power and Potential of Personal Health Records.” Journal of Biomedical Informatics 43 (5) Suppl (Oct. 2010): S3–S5. doi: 10.1016/j.jbi.2010.09.001
   PubMed Web of Science ®Google Scholar
• Care Calendar. 2002. Accessed December 22, 2016. http://www.carecalendar.org
   Google Scholar
• Caring Bridge. 1997. Accessed December 22, 2016. https://www.caringbridge.org/
   Google Scholar
• Chen, Y., V. Ngo, and S. Y. Park. 2013. “Caring for Caregivers: Designing for Integrality.” In Proceedings of the 2013 Conference on Computer Supported Cooperative Work, 91–102.
   Google Scholar
• Chiu, T., and M. A. Massimi. 2006. “Digital Support Device Designed to Help Family Caregivers Coordinate, Communicate and Plan the Care of People with Brain Injury.” In AMIA Annual Symposium 2006, 884.
   Google Scholar
• Connell, C. M., M. R. Janevic, and M. P. Gallant. 2001. “The Costs of Caring: Impact of Dementia on Family Caregivers.” Journal of Geriatric Psychiatry and Neurology 14 (4): 179–187. doi: 10.1177/089198870101400403
   PubMed Web of Science ®Google Scholar
• Consolvo, S., P. Klasnja, D. McDonald, and J. Landay. 2014. “Designing for Healthy Lifestyles: Design Considerations for Mobile Technologies to Encourage Consumer Health and Wellness.” Foundations and Trends in Human-Computer Interaction 6 (3–4): 167–315.
   Google Scholar
• Consolvo, S., P. Roessler, B. E. Shelton, A. LeMarca, and B. Schilit. 2004. “Technology for Care Networks of Elders.” Pervasive Computing, IEEE 3 (2): 22–29. doi: 10.1109/MPRV.2004.1316814
   Web of Science ®Google Scholar
• Czaja, S. J., and M. P. Rubert. 2002. “Telecommunications Technology as an Aid to Family Caregivers of Persons with Dementia.” Psychosomatic Medicine 64 (3): 469–476. doi: 10.1097/00006842-200205000-00011
   PubMed Web of Science ®Google Scholar
• Dionne-Odom, J. N., S. A. Hooker, D. Bekelman, D. Ejem, G. McGha, L. Kitko, A. Strömberg, et al. 2017. “Family Caregiving for Persons with Heart Failure at the Intersection of Heart Failure and Palliative Care: a State-of-the-Science Review.” Heart Failure Review 22: 543–557. doi: 10.1007/s10741-017-9597-4
   PubMed Web of Science ®Google Scholar
• Ebright, P. R., L. Urden, and E. Patterson. 2004. “Themes Surrounding Novice Nurse Near-miss and Adverse-event Situations.” Journal of Nursing Administration 34 (11): 531–538. doi: 10.1097/00005110-200411000-00010
   PubMed Web of Science ®Google Scholar
• Farnham, S., L. Cheng, L. Stone, M. Zaner-Godsey, C. Hibbeln, K. Syrjala, A. M. Clark, and J. Abrams. 2002. “HutchWorld: Clinical Study of Computer-mediated Social Support for Cancer Patients and Their Caregivers.” In Proceedings of the ACM Conference on Human Factors in Computing Systems 2002, 375–382.
   Google Scholar
• Gabe, J., M. Bury, and M. A. Elston. 2004. Key Concepts in Medical Sociology. Thousand Oaks, CA: Sage Publications.
   Google Scholar
• Glaser, B. G., and A. L. Strauss. 1967. The Discovery of Grounded Theory: Strategies for Qualitative Research. New York: New Aldine de Gruyter.
   Google Scholar
• Goren, A., I. Gilloteau, M. Lees, and M. DiBonaventura. 2014. “Quantifying the Burden of Informal Caregiving for Patients with Cancer in Europe.” Supportive Care in Cancer 22: 1637–1646. doi: 10.1007/s00520-014-2122-6
   PubMed Web of Science ®Google Scholar
• Grant, J. S., G. L. Glandon, T. R. Elliott, J. N. Giger, and M. Weaver. 2004. “Caregiving Problems and Feelings Experienced by Family Caregivers of Stroke Survivors the First Month After Discharge.” International Journal of Rehabilitation Research 27 (2): 105–111. doi: 10.1097/01.mrr.0000127639.47494.e3
   PubMed Web of Science ®Google Scholar
• Greenwood, N., A. Mackenzie, G. C. Cloud, and N. Wilson. 2008. “Informal Carers of Stroke Survivors – Factors Influencing Carers: A Systematic Review of Quantitative Studies.” Disability and Rehabilitation 30 (18): 1329–1349. doi: 10.1080/09638280701602178
   PubMed Web of Science ®Google Scholar
• Grunfeld, E., D. Coyle, T. Whelan, J. Clich, L. Reyno, C. C. Earle, A. Willan, et al. 2004. “Family Caregiver Burden: Results of a Longitudinal Study of Breast Cancer Patients and Their Principal Caregivers.” Canadian Medical Association Journal 170 (12): 1795–1801. doi: 10.1503/cmaj.1031205
   Web of Science ®Google Scholar
• Harding, R., and I. J. Higginson. 2003. “What is the Best Way to Help Caregivers in Cancer and Palliative Care? A Systematic Literature Review of Interventions and Their Effectiveness.” Palliative Medicine 17 (1): 63–74. doi: 10.1191/0269216303pm667oa
   PubMed Web of Science ®Google Scholar
• Hartzler, A., M. M. Skeels, M. Mukai, C. Powell, P. Klasnja, and W. Pratt. 2011. “Sharing is Caring, but not Error Free: Transparency of Granular Controls for Sharing Personal Health Information in Social Networks.” In Proceedings of AMIA 2011, 559–568.
   Google Scholar
• Heath, C., and P. Luff. 1991. “Collaborative Activity and Technological Design: Task Coordination in London Underground Control Rooms.” In Proceedings of European Conference on Computer Supported Cooperative Work 1991, 65–80.
   Google Scholar
• Hooley, J. M. 1986. “Expressed Emotion and Depression: Interactions Between Patients and High- versus Low-expressed-emotion Spouses.” Journal of Abnormal Psychology 95: 237–246. doi: 10.1037/0021-843X.95.3.237
   PubMed Web of Science ®Google Scholar
• Jassem, J., J. R. Penrod, A. Goren, and I. Gilloteau. 2015. “Caring for Relatives with Lung Cancer in Europe: An Evaluation of Caregivers’ Experience.” Quality of Life Research 24: 2843–2852. doi: 10.1007/s11136-015-1028-1
   PubMed Web of Science ®Google Scholar
• Jegermalm, M., and G. Sundström. 2015. “Stereotypes About Caregiving and Lessons From the Swedish Panorama of Care.” European Journal of Social Work 18 (2): 185–197. doi: 10.1080/13691457.2014.892476
   Web of Science ®Google Scholar
• Jullamate, P., Z. de Azeredo, C. Paúl, and R. Subgranon. 2006. “Informal Stroke Rehabilitation: What do Thai Caregivers Perform?” International Journal of Rehabilitation Research 29 (4): 309–314. doi: 10.1097/MRR.0b013e328010f507
   PubMed Web of Science ®Google Scholar
• Keith, P. M. 2009. “Health Care Hassles of Caregivers to the Chronically Ill.” International Journal of Aging and Human Development 69 (1): 1–16. doi: 10.2190/AG.69.1.a
   PubMed Web of Science ®Google Scholar
• Klasnja, P., A. Hartzler, C. Powell, G. Phan, and W. Pratt. 2010. “Health Weaver Mobile: Designing a Mobile Tool for Managing Personal Health Information during Cancer Care.” In Proceedings of AMIA 2010, 392–396.
   Google Scholar
• Lee, M., and A. Dey. 2014. “Real-time Feedback for Improving Medication Taking.” In Proceedings of the ACM Conference on Human Factors in Computing Systems 2014, 2259–2268.
   Google Scholar
• Lee, S., C. Tang, S. Y. Park, and Y. Chen. 2012. “Loosely Formed Patient Care Teams: Communication Challenges and Technology Design.” In Proceedings of the 2012 ACM Conference on Computer Supported Cooperative Work 2012, 867–876.
   Google Scholar
• Leichsenring, K. 2004. “Developing Integrated Health and Social Care Services for Older Persons in Europe.” International Journal for Integrated Care 4: 1–15. doi: 10.5334/ijic.107
   Google Scholar
• Liu, L. S., S. H. Hirano, M. Tentori, J. Cheng, S. George, S. Y. Park, and G. Hayes. 2011. “Improving Communication and Social Support for Caregivers of High-risk Infants Through Mobile Technologies.” In Proceedings of the ACM Conference on Computer-supported Cooperative Work 2011, 475–484.
   Google Scholar
• Lopez-Hartmann, M., J. Wens, V. Verhoeven, and R. Remmen. 2012. “The Effect of Caregiver Support Interventions for Informal Caregivers of Community-dwelling Frail Elderly: A Systematic Review.” International Journal of Integrated Care 12: 1–16.
   Web of Science ®Google Scholar
• Lundell, J., T. L. Hayes, S. Vurgun, U. Ozertum, J. Kimel, J. Kaye, F. Guilak, and M. Pavel. 2007. “Continuous Activity Monitoring and Intelligent Contextual Prompting to Improve Medication Adherence.” In Proceedings of IEEE Engineering in Medicine and Biology Society, 6286–6289.
   Google Scholar
• Mangan, P. A., K. L. Taylor, K. R. Yabroff, D. A. Fleming, and J. M. Ingham. 2003. “Caregiving Near the End of Life: Unmet Needs and Potential Solutions.” Palliative & Supportive Care 1 (3): 247–259. doi: 10.1017/S1478951503030414
   PubMedGoogle Scholar
• Mårtensson, J., K. Dracup, C. Canary, and B. Fridlund. 2003. “Living with Heart Failure: Depression and Quality of Life in Patients and Spouses.” The Journal of Heart and Lung Transplantation 22 (4): 460–467. doi: 10.1016/S1053-2498(02)00818-5
   PubMed Web of Science ®Google Scholar
• Mellinger, J. L., and M. L. Volk. 2013. “Multidisciplinary Management of Patients with Cirrhosis: A Need for Care Coordination.” Clinical Gastroenterology and Hepatology: The Official Clinical Practice Journal of the American Gastroenterological Association 11 (3): 217–223. doi: 10.1016/j.cgh.2012.10.040
   PubMed Web of Science ®Google Scholar
• Miller, A. D., S. R. Mishra, L. Kendall, S. Haldar, A. H. Pollack, and W. Pratt. 2016. “Partners in Care: Design Considerations for Caregivers and Patients During a Hospital Stay.” In Proceedings of the 19th ACM Conference on Computer-supported Cooperative Work & Social Computing, 756–769.
   Google Scholar
• Miller, M. D., C. F. Paradis, P. R. Houck, S. Mazumdar, J. A. Stack, A. H. Rifai, B. Mulsant, and C. F. Reynolds. 1992. “Rating Chronic Medical Illness Burden in Geropsychiatric Practice and Research: Application of the Cumulative Illness Rating Scale.” Psychiatry Research 41 (3): 237–248. doi: 10.1016/0165-1781(92)90005-N
   PubMed Web of Science ®Google Scholar
• Mynatt, E. D., J. Rowan, S. Craighill, and A. Jacobs. 2001. “Digital Family Portraits: Supporting Peace of Mind for Extended Family Members.” In Proceedings of the ACM Conference on Human Factors in Computing Systems 2001, 333–340.
   Google Scholar
• Nardi, B. A., and Y. Engeström. 1999. “A Web on the Wind: The Structure of Invisible Work.” Computer Supported Cooperative Work 8: 1–8. doi: 10.1023/A:1008694621289
   Google Scholar
• Neustaedter, C., A. J. B. Brush, and S. Greenberg. 2009. “The Calendar is Crucial: Coordination and Awareness Through the Family Calendar.” ACM Transactions on Computer-Human Interaction 16 (1): 1–48. doi: 10.1145/1502800.1502806
   PubMed Web of Science ®Google Scholar
• Noel, P. H., J. W. Williams, Jr., J. Unutzer, J. Worchel, S. Lee, J. Cornell, W. Katon, L. H. Harpole, and E. Hunkeler. 2004. “Depression and Comorbid Illness in Elderly Primary Care Patients: Impact on Multiple Domains of Health Status and Well Being.” Annal of Family Medicine 2: 555–562. doi: 10.1370/afm.143
   PubMed Web of Science ®Google Scholar
• Nunes, F., N. Verdezoto, G. Fitzpatrick, M. Kyng, E. Grönvall, and C. Storni. 2015. “Self-care Technologies in HCI: Trends, Tensions, and Opportunities.” ACM Transactions on Computer-Human Interaction 22 (6): 1–45. doi: 10.1145/2803173
   Web of Science ®Google Scholar
• Osse, B. H., M. J. Vernooij-Dassen, E. Schadé, and R. P. Grol. 2006. “Problems Experienced by the Informal Caregivers of Cancer Patients and Their Needs for Support.” Cancer Nursing 29 (5): 378–388. doi: 10.1097/00002820-200609000-00005
   PubMed Web of Science ®Google Scholar
• Patterson, E. S., E. M. Roth, D. D. Woods, R. Chow, and J. O. Gomes. 2004. “Handoff Strategies in Settings with High Consequences for Failure: Lessons for Health Care Operations.” International Journal for Quality in Health Care 16 (2): 125–132. doi: 10.1093/intqhc/mzh026
   PubMed Web of Science ®Google Scholar
• Pew Internet Report. 2013. Family Caregivers are Wired for Health. Accessed July 18, 2013. http://www.pewinternet.org/Reports/2013/Family-Caregivers.aspx
   Google Scholar
• Pew Research Center. 2015a. Five Facts About Family Caregivers. Accessed December 21, 2016. http://www.pewresearch.org/fact-tank/2015/11/18/5-facts-about-family-caregivers/
   Google Scholar
• Pew Research Center. 2015b. The Cost of Caring. Accessed May 30, 2017. http://www.pewinternet.org/2015/01/15/the-cost-of-caring/
   Google Scholar
• “Philips CarePartners Mobile App Helps Ease Burden of Caregiver Coordination.” 2012. Accessed December 22, 2016. http://www.usa.philips.com/a-w/about/news/archive/standard/news/press/2012/20121205_Philips_CarePartners_Mobile_App.html
   Google Scholar
• Reddy, M. C., and P. Dourish. 2002. “A Finger on the Pulse: Temporal Rhythms on Information Seeking in Medical Work.” In Proceedings of the ACM Conference of Computer Supported Cooperative Work 2002, 344–353.
   Google Scholar
• Schmidt, K., and L. Bannon. 1992. “Taking CSCW Seriously: Supporting Articulation Work.” Computer Supported Cooperative Work 1: 7–40. doi: 10.1007/BF00752449
   Google Scholar
• Schorch, M., L. Wan, D. Randall, and V. Wulf. 2016. “Designing for Those Who are Overlooked – Insider Perspectives on Care Practices and Cooperative Work of Elderly Informal Caregivers.” In Proceedings of the ACM Conference of Computer Supported Cooperative Work and Social Computing, 787–799.
   Google Scholar
• Shaw, C., R. McNamara, K. Abrams, R. Cannings-John, K. Hood, M. Longo, S. Myles, S. O’Mahony, B. Roe, and K. Williams. 2009. “Systematic Review of Respite Care in the Frail Elderly.” Health Technology Assessment 13 (20): 1–244. doi: 10.3310/hta13200
   PubMed Web of Science ®Google Scholar
• Siek, K. A., D. U. Khan, S. E. Ross, L. M. Haverhals, J. Meyers, and S. R. Cali. 2011. “Designing a Personal Health Application for Older Adults to Manage Medications: A Comprehensive Case Study.” Journal of Medical Systems 35 (5): 1099–1121. doi: 10.1007/s10916-011-9719-9
   PubMed Web of Science ®Google Scholar
• Sigurdardottir, S. H., and I. Kareholt. 2014. “Informal and Formal Care of Older People in Iceland.” Scandinavian Journal of Caring Sciences 28: 802–811. doi: 10.1111/scs.12114
   PubMed Web of Science ®Google Scholar
• Skeels, M., K. Unruh, C. Powell, and W. Pratt. 2010. “Catalyzing Social Support for Breast Cancer Patients.” In Proceedings of the ACM Conference on Human Factors in Computing Systems 2010, 173–182.
   Google Scholar
• Star, S. L., and A. Strauss. 1999. “Layers of Silence, Arenas of Voice: The Ecology of Visible and Invisible Work.” Computer Supported Cooperative Work 8 (1–2): 9–30. doi: 10.1023/A:1008651105359
   Google Scholar
• Strauss, A., S. Fagerhaugh, B. Suczek, and C. Wiener. 1985. Social Organization of Medical Work. Chicago: University of Chicago.
   Google Scholar
• Suchman, L. 1995. “Making Work Visible.” Communications of the ACM 38 (9): 56–64. doi: 10.1145/223248.223263
   Web of Science ®Google Scholar
• Tang, P., J. S. Ash, D. W. Bates, J. M. Overhage, and D. Z. Sands. 2006. “Personal Health Records: Definitions, Benefits, and Strategies for Overcoming Barriers to Adoption.” Journal of American Medical Informatics Association 13 (2): 121–126. doi: 10.1197/jamia.M2025
   PubMed Web of Science ®Google Scholar
• Tang, C., and S. Carpendale. 2007. “An Observational Study on Information Flow during Nurses’ Shift Work.” In The ACM Conference on Human Factors in Computing Systems 2007, 219–228.
   Google Scholar
• Teri, L., and A. W. Wagner. 1991. “Assessment of Depression in Patients with Alzheimer’s Disease: Concordance among Informants.” Psychology and Aging 6 (2): 280–285. doi: 10.1037/0882-7974.6.2.280
   PubMed Web of Science ®Google Scholar
• Tixier, M., G. Gaglio, and M. Lewkowicz. 2009. “Translating Social Support Practices into Online Services for Family Caregivers.” In Proceedings of the ACM 2009 International Conference on Supporting Group Work, 71–80.
   Google Scholar
• Tixier, M., and M. Lewkowicz. 2009. “Designing Social Support Online Services for Communities of Family Caregivers.” In International Conference on Business Information Systems. Springer Berlin Heidelberg, 336–347.
   Google Scholar
• Tixier, M., and M. Lewkowicz. 2016. “‘Counting on the Group’ Reconciling Online and Offline Social Support among Older Informal Caregivers.” In Proceedings of the ACM Conference on Human Factors in Computing Systems 2016, 3545–3558.
   Google Scholar
• Toljamo, M., M. L. Perala, and H. Laukkala. 2012. “Impact of Caregiving on Finnish Family Caregivers.” Scandinavian Journal of Caring Sciences 26: 211–218. doi: 10.1111/j.1471-6712.2011.00919.x
   PubMed Web of Science ®Google Scholar
• Travis, S. S., W. J. McAuley, J. Dmochowski, M. A. Bernard, S. Kao, and R. Greene. 2007. “Factors Associated with Medication Hassles Experienced by Family Caregivers of Older Adults.” Patient Education and Counseling 66 (1): 51–57. doi: 10.1016/j.pec.2006.10.004
   PubMed Web of Science ®Google Scholar
• Vuorimaa, P., P. Harmo, M. Hämäläinen, T. Itälä, and R. Miettinen. 2012. “Active Life Home: A Portal-based Home Care Platform.” In Proceedings of the 5th International Conference on Pervasive Technologies Related to Assistive Environments, Article 28.
   Google Scholar
• Weinberg, D., R. Lusenhop, J. Gittell, and C. Kautz. 2007. “Coordination Between Formal Providers and Informal Caregivers.” Health Care Management Review 32 (2): 140–149. doi: 10.1097/01.HMR.0000267790.24933.4c
   PubMed Web of Science ®Google Scholar
• Yamashita, N., H. Kuzuoka, K. Hirata, and T. Kudo. 2013. “Understanding the Conflicting Demands of Family Caregivers Caring for Depressed Family Members.” In Proceedings of the ACM Conference on Human Factors in Computing Systems 2013, 2637–2646.
   Google Scholar