Michael Massimi
Ronald M. Baecker
ABSTRACT
Increasingly, systems are being developed and used in ways that involve end of life issues such as death, dying, and bereavement. Yet design considerations and guidelines for technologists working in this sensitive area are not well-established. We therefore report on exploratory fieldwork consisting of focus groups, observations, and consultation with bereavement experts aimed at understanding how technology might be designed to support bereaved parents. From this fieldwork, we derive a set of considerations useful for researchers and designers developing systems that deal specifically with bereavement, and with the end of life more broadly. These considerations focus on interpersonal communication, new ways of being in the world, and materiality. We conclude with a distillation of these considerations into practical design guidelines for working in this area.
- MyWonderfulLife. https://www.mywonderfullife.com/.Google Scholar
- Legacy Locker. http://legacylocker.com/.Google Scholar
- Entrustet. https://www.entrustet.com/.Google Scholar
- Forever Missed. http://www.forevermissed.com/.Google Scholar
- MADD MN - Mothers Against Drunk Driving, Minnesota. http://www.maddmn.org/programs_quilt.html.Google Scholar
- Aho, A.L., Tarkka, M., Astedt-Kurki, P., and Kaunonen, M. Fathers' Experience of Social Support After the Death of a Child. American Journal of Men's Health 3, 2 (2009), 93--103.Google ScholarCross Ref
- Bartalos, M. K. Speaking of Death: America's New Sense of Mortality. Praeger, 2008.Google Scholar
- Becker, E. The Denial of Death. Simon and Schuster, 1997.Google Scholar
- Buckle, J. L. and Fleming, S. Parenting after the Death of a Child: A Practitioner's Guide. Routledge, 2010.Google Scholar
- Davidowitz, M. and Myrick, R. D. Responding to the bereaved: An analysis of "helping" statements. Death Education 8, 1 (1984), 1.Google ScholarCross Ref
- Dimond, J. P., Poole, E. S., and Yardi, S. The effects of life disruptions on home technology routines. Proc. GROUP 2010, ACM (2010), 85--88. Google ScholarDigital Library
- Freud, S. Mourning and melancholia. Journal of Nervous and Mental Disease 56, 5 (1922), 543--545.Google ScholarCross Ref
- Friedman, B. and Nathan, L. P. Multi-lifespan information system design: a research initiative for the hci community. Proc. CHI 2010, ACM (2010), 2243--2246. Google ScholarDigital Library
- Glaser, B. G. and Strauss, A. Awareness of Dying. Aldine Transaction, 1965.Google Scholar
- Hallam, E. and Hockey, J. Death, Memory and Material Culture. Berg Publishers, 2001.Google Scholar
- Helmes, J., Cao, X., Lindley, S. E., and Sellen, A. Developing the story: designing an interactive storytelling application. Proceedings of the ACM International Conference on Interactive Tabletops and Surfaces, ACM (2009), 49--52. Google ScholarDigital Library
- Höök, K., Ståhl, A., Sundström, P., and Laaksolaahti, J. Interactional empowerment. Proc. CHI 2008, ACM (2008), 647--656. Google ScholarDigital Library
- Howarth, G. Death and Dying: A Sociological Introduction. Polity, 2006.Google Scholar
- Kaunonen, M., Tarkka, M., Paunonen, M., and Laippala, P. Grief and social support after the death of a spouse. Journal of Advanced Nursing 30, 6 (1999), 1304--1311.Google ScholarCross Ref
- Kirk, D. and Banks, R. On the design of technology heirlooms. International Workshop on Social Interaction and Mundane Technologies 2008, (2008).Google Scholar
- Kirk, D. S. and Sellen, A. On human remains: Values and practice in the home archiving of cherished objects. ACM Trans. Comput.-Hum. Interact. 17, 3 (2010), 1--43. Google ScholarDigital Library
- Klass. Continuing Bonds: New Understandings Of Grief. Taylor & Francis, 1996.Google Scholar
- Martin, T. L. and Doka, K. J. Men Don't Cry - Women Do: Transcending Gender Stereotypes of Grief. Psychology Press, 2000.Google Scholar
- Massimi, M. and Baecker, R. M. A death in the family: opportunities for designing technologies for the bereaved. Proc. CHI 2010, ACM (2010), 1821--1830. Google ScholarDigital Library
- Massimi, M. and Charise, A. Dying, death, and mortality: towards thanatosensitivity in HCI. Proc. CHI 2009 Extended Abstracts, ACM (2009), 2459--2468. Google ScholarDigital Library
- Massimi, M., Odom, W., Kirk, D., and Banks, R. HCI at the end of life: understanding death, dying, and the digital. Proc. CHI 2010 Extended Abstracts, ACM (2010), 4477--4480. Google ScholarDigital Library
- Moncur, W. Providing affective information to family and friends based on social networks. Proc. CHI 2007 Extended Abstracts, ACM (2007), 2219--2224. Google ScholarDigital Library
- Nadeau, J. W. Meaning-Making in Bereaved Families: Assessment, Intervention, and Future Research. In Handbook of Bereavement Research and Practice: Advances in Theory and Intervention. American Psychological Association (APA), 2008, 511--530.Google ScholarCross Ref
- Odom, W., Harper, R., Sellen, A., Kirk, D., and Banks, R. Passing on & putting to rest: understanding bereavement in the context of interactive technologies. Proc. CHI 2010, ACM (2010), 1831--1840. Google ScholarDigital Library
- Oliveri, T. Grief groups on the internet. Bereavement Care 22, 3 (2003), 39.Google ScholarCross Ref
- Schwab, R. A child's death and divorce: Dispelling the myth. Death Studies 22, 5 (1998), 445--468.Google ScholarCross Ref
- Stone, L. D. and Pennebaker, J. W. Trauma in Real Time: Talking and Avoiding Online Conversations About the Death of Princess Diana. Basic and Applied Social Psychology 24, 3 (2002), 173.Google ScholarCross Ref
- Stroebe, M. S. Coping with bereavement: A review of the grief work hypothesis. Omega: Journal of Death and Dying 26, 1 (1992), 19--42.Google Scholar
- Sudnow, D. Passing on: The Social Organization of Dying. Prentice Hall, 1967.Google Scholar
- Uriu, D. and Okude, N. ThanatoFenestra: photographic family altar supporting a ritual to pray for the deceased. Proc. DIS 2010, ACM (2010), 422--425. Google ScholarDigital Library
- Vale-Taylor, P. "We will remember them": a mixed-method study to explore which post-funeral remembrance activities are most significant and important to bereaved people living with loss, and why those particular activities are chosen. Palliative Medicine, (2009), 537--544 vol. 23.Google Scholar
- Van den Hoven, E., Smeenk, W., Bilsen, H., Zimmerman, R., de Waart, S., and van Turnhout, K. Communicating commemoration. International Workshop on Social Interaction and Mundane Technologies 2008, (2008).Google Scholar
- Volkan, V. D. The Linking Objects of Pathological Mourners. Arch Gen Psychiatry 27, 2 (1972), 215--221.Google ScholarCross Ref
- Worden, J. W. Grief Counseling and Grief Therapy: A Handbook for the Mental Health Practitioner. Springer Publishing Co., Inc., 2008.Google ScholarCross Ref
- Wortham, J. As Older Users Join Facebook, Network Grapples With Death. The New York Times, 2010. http://www.nytimes.com/2010/07/18/technology/18death.html.Google Scholar
- Wright, P. and McCarthy, J. Empathy and experience in HCI. Proc. CHI 2008, ACM (2008), 637--646. Google ScholarDigital Library
- Wyche, S. P., Magnus, C. M., and Grinter, R. E. Broadening Ubicomp's vision: an exploratory study of charismatic pentecostals and technology use in Brazil. Proc. UBICOMP 2009, ACM (2009), 145--154. Google ScholarDigital Library
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- Dealing with death in design: developing systems for the bereaved
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