Andrea Barbarin
ABSTRACT
This study examined the use of time-based objects by patients and their families to manage chronic illnesses at home. Calendar systems and medication containers, the main types of time-based objects studied, were used as part of two family-based collaborative work practices: 1) prompting health management activities, and 2) safeguarding these activities. Additionally, these artifacts were part of two social interaction patterns that managed emotional intimacy: 1) expressing support, and 2) hiding and disguising illness. Accordingly, home-based illness management may be more collaborative than previously recognized. Moreover, through their interactive incorporation into family life, time-based objects are laden with psychosocial significance. Breakdowns in temporal support were also evident, and were accompanied by: missed medication events; rationing of medications; medication errors; and difficulties with preparation for medical appointments. We propose novel artifact designs to better support patients and their families in managing the temporal aspects of chronic illness together.
- About GlowCap. Vitality. http://www.vitality.net/glowcaps.html.Google Scholar
- Bardram, J. Designing for the dynamics of cooperative work activities. In Proc. CSCW 1998, ACM Press (1998), 89--98. Google ScholarDigital Library
- Bauer, A. M., Thielke, S. M., Katon, W., Unützer, J. and Areán, P. Aligning health information technologies with effective service delivery models to improve chronic disease care. Preventive Medicine 66, (2014), 167--172.Google ScholarCross Ref
- Birth, K. Objects of time: How things shape temporality. Palgrave Macmillan, NY (2012).Google ScholarCross Ref
- Blumenthal, D. and Tavenner, M. The "meaningful use" regulation for electronic health records. New England Journal of Medicine 363, 6 (2010), 501--504.Google ScholarCross Ref
- Bødker, S. and Grönvall, E. Calendars: Time coordination and overview in families and beyond. In Proc. ECSCW 2013, Springer (2013), 63--81.Google ScholarCross Ref
- Borchard, A., Schwappach, D. L., Barbir, A. and Bezzola, P. A systematic review of the effectiveness, compliance, and critical factors for implementation of safety checklists in surgery. Annals of Surgery 256, 6 (2012), 925--933.Google ScholarCross Ref
- Bossen, C., Christensen, L. R., Grönvall, E. and Vestergaard, L. S. CareCoor: Augmenting the coordination of cooperative home care work. International Journal of Medical Informatics 82, 5 (2013), e189-e199.Google ScholarCross Ref
- Boutwell, A., Silber, S., Nguyen, D., Ryan, L. and Melville, L. Post-Acute care: What does it have to do with me? Current Emergency and Hospital Medicine Reports 2, 1 (2014), 9--15.Google ScholarCross Ref
- Browne, J. L., Ventura, A., Mosely, K. and Speight, J. "I call it the blame and shame disease": A qualitative study about perceptions of social stigma surrounding type 2 diabetes. BMJ Open 3, 11 (2013).Google Scholar
- Charmaz, K. Constructing grounded theory: 2nd Edition. SAGE, Los Angeles (2014).Google Scholar
- Charmaz, K. Good days, bad days: The self in chronic illness and time. Rutgers University Press, New Brunswick (1991).Google Scholar
- Chenard, C. The impact of stigma on the self-care behaviors of HIV-positive gay men striving for normalcy. Journal of the Association of Nurses in AIDS Care 18, 3 (2007), 23--32.Google ScholarCross Ref
- Colineau, N. and Paris, C. Motivating reflection about health within the family: The use of goal setting and tailored feedback. User Modeling and User-Adapted Interaction 21, 4--5 (2011), 341--376. Google ScholarDigital Library
- Collier, J. and Collier, M. Visual anthropology: Photography as a research method. University of New Mexico Press, Albuquerque (1986).Google Scholar
- Corbin, J. and Strauss, A. Managing chronic illness at home: Three lines of work. Qualitative Sociology 8, 3 (1985), 224--247.Google ScholarCross Ref
- Crabtree, A., Hemmings, T., Rodden, T. and Mariani, J. Informing the development of calendar systems for domestic use. In Proc. ECSCW 2003, Springer (2003), 119--138. Google ScholarDigital Library
- Crabtree, A. and Rodden, T. Domestic routines and design for the home. Computer Supported Cooperative Work 13, 2 (2004), 191--220. Google ScholarDigital Library
- Digital Health Feedback System. Proteus Digital Health. http://www.proteus.com/technology/digitalhealth-feedback-system.Google Scholar
- Dix, A. Computer supported cooperative work: A framework. In D. Rosenberg and C. Hutchison (eds.) Design issues in CSCW, Springer, NY (1994), 926.Google ScholarCross Ref
- Dourish, P. Where the action is: The foundations of embodied interaction. MIT Press, Cambridge, Mass. (2004).Google Scholar
- Elliot, K., Neustaedter, C. and Greenberg, S. Time, ownership and awareness: The value of contextual locations in the home. UbiComp 2005: Ubiquitous Computing Lecture Notes in Computer Science 3660, (2005), 251--268. Google ScholarDigital Library
- England, K. Home, work and the shifting geographies of care. Ethics, Place & Environment 13, 2 (2010), 131150.Google Scholar
- Eschler, J., Kendall, L., O'Leary, K., Vizer, L., Lozano, P., McClure, J., Pratt, W. and Ralston, J. Shared calendars for home health management. In Proc. CSCW 2015, ACM Press (2015). Google ScholarDigital Library
- Flaherty, M. G. The textures of time: Agency and temporal experience. Temple University Press, Philadelphia (2011).Google Scholar
- Fox, S. and Jones, S. The social life of health information, 2011. Pew Research Center & California HealthCare Foundation, Washington, DC (2011).Google Scholar
- Goldzweig, C. L., Orshansky, G., Paige, N. M., Towfigh, A. A., Haggstrom, D. A., Miake-Lye, I., Beroes, J. M. and Shekelle, P. G. Electronic patient portals: Evidence on health outcomes, satisfaction, efficiency, and attitudes: A systematic review. Annals of Internal Medicine 159, 10 (2013), 677--687.Google ScholarCross Ref
- Gomes, B., Calanzani, N. and Higginson, I. J. Reversal of the British trends in place of death: Time series analysis 2004--2010. Palliative Medicine 26, 2 (2012), 102--107.Google ScholarCross Ref
- Grimes, A. and Brush, A. Life scheduling to support multiple social roles. In Proc. CHI 2008, ACM Press (2008), 821--824. Google ScholarDigital Library
- Grimes, A., Tan, D. and Morris, D. Toward technologies that support family reflections on health. In Proc. GROUP 2009, ACM Press (2009), 311--320. Google ScholarDigital Library
- Hansen, S. M., Tolle, S. W. and Martin, D. P. Factors associated with lower rates of in-hospital death. Journal of Palliative Medicine 5, 5 (2002), 677--685.Google ScholarCross Ref
- Hartel, J. and Thomson, L. Visual approaches and photography for the study of immediate information space. Journal of the American Society for Information Science and Technology 62, 11 (2011), 2214--2224. Google ScholarDigital Library
- Haycock-Stuart, E. and Kean, S. Shifting the balance of care? A qualitative study of policy implementation in community nursing. Journal of Nursing Management 21, 6 (2013), 867--877.Google ScholarCross Ref
- How to Help the Community and Provide Caregiver Support. Lotsa Helping Hands. http://www.lotsahelpinghands.com/how-it-works/.Google Scholar
- Jeffries, A. Smart pill bottle measures meds using touchscreen technology. The Verge. http://www.theverge.com/2012/10/8/3473218/smartpill-bottle-adheretech-capacitance.Google Scholar
- Jewitt, C. and Van Leeuwen, T. The handbook of visual analysis. SAGE, London (2001).Google Scholar
- Khan, D. U., Ananthanarayan, S., Le, A. T., Schaefbauer, C. L. and Siek, K. A. Designing mobile snack application for low socioeconomic status families. In Proc. PervasiveHealth 2012, IEEE (2012), 57--64.Google ScholarCross Ref
- Klasnja, P., Civan Hartzler, A., Unruh, K. T. and Pratt, W. Blowing in the wind: Unanchored patient information work during cancer care. In Proc. CHI 2010, ACM Press (2010), 193--202. Google ScholarDigital Library
- Klasnja, P., Hartzler, A., Powell, C., Phan, G. and Pratt, W. Health weaver mobile: Designing a mobile tool for managing personal health information during cancer care. In Proc. AMIA Symposium 2010, AMIA (2010), 392--396.Google Scholar
- Klasnja, P., Hartzler, A., Powell, C. and Pratt, W. Supporting cancer patients' unanchored health information management with mobile technology. In Proc. AMIA Symposium 2011, AMIA (2011), 732--741.Google Scholar
- Kramarow, E., Lentzner, H., Rooks, R., Weeks, J. and Saydah, S. Health, USA, 1999 with health and aging chartbook. National Center for Health Statistics, Hyattsville, MD, USA (1999).Google Scholar
- Lee, M. L. and Dey, A. K. Real-time feedback for improving medication taking. In Proc. CHI 2014, ACM Press (2014), 2259--2268. Google ScholarDigital Library
- Lee, R., Kochman, A. and Sikkema, K. Internalized stigma among people living with HIV-AIDS. AIDS and Behavior 6, 4 (2002), 309--319.Google ScholarCross Ref
- McCoy, L. Time, self and the medication day: A closer look at the everyday work of "adherence". Sociology of Health & Illness 31, 1 (2009), 128--146.Google ScholarCross Ref
- Meeussen, K., Van Den Block, L., Echteld, M. A., Boffin, N., Bilsen, J., Van Casteren, V., Abarshi, E., Donker, G., Onwuteaka-Philipsen, B. and Deliens, L. End-of-Life care and circumstances of death in patients dying as a result of cancer in Belgium and The Netherlands: A retrospective comparative study. Journal of Clinical Oncology 29, 32 (2011), 4327--4334.Google ScholarCross Ref
- Moen, A. and Brennan, P. F. Health@ Home: the work of health information management in the household (HIMH): implications for consumer health informatics (CHI) innovations. Journal of the American Medical Informatics Association 12, 6 (2005), 648--656.Google ScholarCross Ref
- Neustaedter, C., Brush, A. and Greenberg, S. The calendar is crucial: Coordination and awareness through the family calendar. ACM Transactions on ComputerHuman Interaction 16, 1 (2009), Article No. 6. Google ScholarDigital Library
- Palen, L. Social, individual and technological issues for groupware calendar systems. In Proc. CHI 1999, ACM Press (1999), 17--24. Google ScholarDigital Library
- Parker, K. and Patten, E. The sandwich generation: Rising financial burdens for middle-aged Americans. Pew Research Center, Washington, DC (2013).Google Scholar
- Pink, S. Doing visual ethnography: Images, media, and representation in research. SAGE, London (2007).Google Scholar
- Pratt, W., Unruh, K., Civan, A. and Skeels, M. M. Personal health information management. Communications of the ACM 49, 1 (2006), 51--55. Google ScholarDigital Library
- Shekelle, P., Wachter, R., Pronovost, P., Schoelles, K., McDonald, K., Dy, S., Shojania, K., Reston, J., Berger, Z. and Johnsen, B. Evidence report/technology assessment - No. 211: Making health care safer II: An updated critical analysis of the evidence for patient safety practices. Agency for Healthcare Research and Quality, Rockville, MD, USA (2013).Google Scholar
- Stawarz, K., Cox, A. and Blandford, A. Don't forget your pill!: Designing effective medication reminder apps that support users' daily routines. In Proc. CHI 2014, ACM Press (2014), 2269--2278. Google ScholarDigital Library
- Support for Your Health Journey. Caring Bridge. http://www.caringbridge.org.Google Scholar
- Thayer, A., Bietz, M. J., Derthick, K. and Lee, C. P. I love you, let's share calendars: Calendar sharing as relationship work. In Proc. CSCW 2012, ACM Press (2012), 749--758. Google ScholarDigital Library
- Thoits, P. A. Stress, coping, and social support processes: Where are we? What next? Journal of Health and Social Behavior 35, (1995), 53--79.Google ScholarCross Ref
- UMLS: RxNorm. U.S. National Library of Medicine. http://www.nlm.nih.gov/research/umls/rxnorm.Google Scholar
- Veinot, T. "A lot of people didn't have a chance to support us because we never told them" Stigma management, information poverty and HIV/AIDS information/help networks. In Proc. American Society for Information Science and Technology 2009, Wiley (2009), 1--20.Google Scholar
- Veinot, T. Power to the patient- A critical examination of patient empowerment discourses. In R. M. Harris, C. N. Wathen and S. Wyatt (eds.) Configuring health consumers: Health work and the imperative of personal responsibility, Palgrave Macmillan, NY (2010), 30--41.Google ScholarCross Ref
- Veinot, T. C. E., Kim, Y.-M. and Meadowbrooke, C. C. Health information behavior in families: Supportive or irritating? In Proc. American Society for Information Science and Technology 2011, Wiley (2011), 1--10.Google Scholar
- Wilson, D. M., Truman, C. D., Thomas, R., Fainsinger, R., Kovacs-Burns, K., Froggatt, K. and Justice, C. The rapidly changing location of death in Canada, 19942004. Social Science and Medicine 68, 10 (2009), 1752--1758.Google ScholarCross Ref
- Wood, W. and Neal, D. T. A new look at habits and the habit-goal interface. Psychological Review 114, 4 (2007), 843--863.Google ScholarCross Ref
- Wood, W., Tam, L. and Witt, M. G. Changing circumstances, disrupting habits. Journal of Personality and Social Psychology 88, 6 (2005), 918--933.Google ScholarCross Ref
Index Terms
- Taking our Time: Chronic Illness and Time-Based Objects in Families
Recommendations
Why Taking Medicine Is a Chore --- An Analysis of Routine and Contextual Factors in the Home
HCD 09: Proceedings of the 1st International Conference on Human Centered Design: Held as Part of HCI International 2009Medication adherence is an important concern for many people. This is especially so in the older adults population where non-adherence can have serious consequences and may lead to higher healthcare cost. Non-adherence is a problem that afflicts the ...
Data-based Analysis on the Changes of Medication in Military Outpatient Clinic of a Military Hospital in 2014 and 2018
ICEMC '22: Proceedings of the 2022 International Conference on E-business and Mobile CommerceAbstract: To understand the changing trend and characteristics of drug use in out-patient patients, analyse the irrational phenomenon of drug use in military personnel at present, and provide scientific basis for further doing out-patient work. ...
Understanding parent-pediatrician interactions for the design of health technologies
IHI '10: Proceedings of the 1st ACM International Health Informatics SymposiumThe Well Child Visit between a parent and a pediatrician is one of the fundamental means to ensure the healthy development of young children. In this paper, we present the results of a qualitative, formative study aiming to understand the nature of the ...
Comments