Anna N. Baglione
Patrick C. Shih
ABSTRACT
The experience of grief and death is an inevitable part of life. Grief, a natural response to death, can be a challenging and emotionally taxing journey. Bereaved individuals often feel lost in a fog, unaware of resources available to them and unsure of which resources could be useful for supporting their healing process. Complicated grief, a more intense form of grief that extends beyond six months following the death of a loved one, presents both a unique challenge and a design opportunity for the HCI community. In this work, we present the results of a survey and interview study on the technological practices of complicated grievers. Based on themes found in the data, we propose a new model for complicated grief in the digital age, consisting of the following phases: Fog, Isolation, Exploration, Immersion, and Stabilization. We then present a set of design considerations for designers seeking to create tools for complicated grievers navigating their unique grief journeys.
Supplemental Material
- Arnold, J., and Gemma, P. B. The Continuing Process of Parental Grief. Death Studies 32, 7 (2008), 658--673.Google Scholar
- Beyond Indigo Forums. Online Grief Support, Help for Coping with Loss - Beyond Indigo Forums. http://forums.grieving.com.Google Scholar
- Bonanno, G. A., Wortman, C. B., Lehman, D. R., Tweed, R. G., Haring, M., Sonnega, J., Carr, D., and Nesse, R. M. Resilience to loss and chronic grief: a prospective study from preloss to 18-months postloss. Journal of personality and social psychology 83, 5 (2002), 1150--1164.Google Scholar
- Brubaker, J. R., and Callison-Burch, V. Legacy contact: Designing and implementing post-mortem stewardship at facebook. In Proceedings of the 2016 CHI Conference on Human Factors in Computing Systems, CHI '16, ACM (2016), 2908--2919. Google ScholarDigital Library
- Brubaker, J. R., and Hayes, G. R. We will never forget you {online}: An Empirical Investigation of Post-mortem MySpace Comments. In Proceedings of the 2011 ACM Conference on Computer Supported Cooperative Work, CSCW '11, ACM (2011), 123--132. Google ScholarDigital Library
- Brubaker, J. R., Hayes, G. R., and Dourish, P. Beyond the Grave: Facebook as a Site for the Expansion of Death and Mourning. The Information Society 29, 3 (2013), 152--163. Google ScholarDigital Library
- Burke, M., and Kraut, R. E. The Relationship between Facebook Use and Well-Being depends on Communication Type and Tie Strength. Journal of Computer-Mediated Communication 21, 4 (2016), 265--281. Google ScholarDigital Library
- Corbin, J., and Strauss, A. Basics of Qualitative Research: Techniques and Procedures for Developing Grounded Theory. Sage, 2014.Google Scholar
- Cvinar, J. G. Do suicide survivors suffer social stigma: A review of the literature. Perspectives in Psychiatric Care 41, 1 (2005), 14--21.Google ScholarCross Ref
- Doka, K. J., and Martin, T. L. Grieving beyond gender: understanding the ways men and women mourn. Routledge, 2010.Google Scholar
- Dominick, S. A., Irvine, A. B., Beauchamp, N., Seeley, J. R., Nolen-Hoeksema, S., Doka, K. J., and Bonanno, G. A. An internet tool to normalize grief. OMEGA Journal of Death and Dying 60, 1 (2010), 71--87.Google ScholarCross Ref
- Douglas, M. Randy pausch, 47, dies; his last lecture inspired many to live with wonder. http://www.nytimes.com/2008/07/26/us/26pausch. html?mcubz=0", July 2008.Google Scholar
- Dume, G. Exploring bereavement in albanian college students. Master's thesis, Ball State University, 2011.Google Scholar
- Foong, P. S., and Kera, D. Applying reflective design to digital memorials. SIMTech'08 (2008).Google Scholar
- Futterman, A., Holland, J. M., Brown, P. J., Thompson, L. W., and Gallagher-Thompson, D. Factorial validity of the texas revised inventory of grief-present scale among bereaved older adults. Psychological Assessment 22, 3 (2010), 675--687.Google ScholarCross Ref
- Gillies, J., and Neimeyer, R. A. Loss, Grief, and the Search for Significance: Toward a Model of Meaning Reconstruction in Bereavement. Journal of Constructivist Psychology 19 (2006), 31--65.Google ScholarCross Ref
- Grief In Common. http://www.griefincommon.com.Google Scholar
- Horowitz, M. J. Psychodynamics and Cognition. University of Chicago Press, 1988.Google Scholar
- Kochanek, M.A., K. D., Murphy, B.S., S. L., Xu, M.D., J., and Tejada-Vera, M.S., B. Deaths : Final Data for 2014. National Vital Statistics Reports 65, 4 (2016).Google Scholar
- Kroenke, K., Spitzer, R. L., and Williams, J. B. W. The PHQ-9 Validity of a Brief Depression Severity Measure. Journal of General Internal Medicine 16, 9 (2001), 606--613.Google ScholarCross Ref
- Kubler-Ross, E. On Death Dying: What the Dying Have to Teach Doctors, Nurses, Clergy Their Own Families. The Macmillan Company, 1969.Google Scholar
- Massimi, M. Exploring remembrance and social support behavior in an online bereavement support group. In Proceedings of the 2013 Conference on Computer Supported Cooperative Work, CSCW '13, ACM (2013), 1169--1180. Google ScholarDigital Library
- Massimi, M., and Baecker, R. M. A Death in the Family: Opportunities for Designing Technologies for the Bereaved. In Proceedings of the 2010 SIGCHI Conference on Human Factors in Computing Systems, ACM (2010), 1821--1830. Google ScholarDigital Library
- Massimi, M., and Baecker, R. M. Dealing with Death in Design: Developing Systems for the Bereaved. In Proceedings of the 2011 SIGCHI Conference on Human Factors in Computing Systems, ACM (2011), 1001--1010. Google ScholarDigital Library
- Moncur, W., Bikker, J., Kasket, E., and Troyer, J. From Death to Final Disposition: Roles of Technology in the Post-Mortem Interval. Proceedings of the 2012 SIGCHI Conference on Human Factors in Computing Systems (2012). Google ScholarDigital Library
- Moncur, W., Julius, M., Van Den Hoven, E., and Kirk, D. Story Shell: the participatory design of a bespoke digital memorial. Participatory Innovation Conference 2015 (2015), 470--477.Google Scholar
- Moncur, W., and Kirk, D. An emergent framework for digital memorials. In Proceedings of the 2014 Conference on Designing Interactive Systems, DIS '14, ACM (2014), 965--974. Google ScholarDigital Library
- Moules, N. J., Simonson, K., Fleiszer, A. R., Prins, M., and Glasgow, B. The Soul of Sorrow Work: Grief and Therapeutic Interventions with Families. Journal of Family Nursing 13, 1 (2007), 117--141.Google ScholarCross Ref
- Neimeyer, R. A. The language of loss: Grief therapy as a process of meaning reconstruction. In Meaning reconstruction & the experience of loss. American Psychological Association, Washington, DC, US, 2001, 261--292.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. In Proceedings of the SIGCHI Conference on Human Factors in Computing Systems, CHI '10, ACM (2010), 1831--1840. Google ScholarDigital Library
- OFFTIME. ( OFFTIME ) -- Focus Digital Balance. http://offtime.co/.Google Scholar
- Prigerson, H. G., Horowitz, M. J., Jacobs, S. C., Parkes, C. M., Aslan, M., Goodkin, K., Raphael, B., Marwit, S. J., Wortman, C., Neimeyer, R. A., Bonanno, G., Block, S. D., Kissane, D., Boelen, P., Maercker, A., and Maciejewski, P. K. Prolonged Grief Disorder: Psychometric Validation of Criteria Proposed for DSM-V and ICD-11. PLoS Med 6, 8 (2009).Google ScholarCross Ref
- Prigerson, H. G., Maciejewski, P. K., Reynolds, C. F., Bierhals, A. J., Newsom, J. T., Fasiczka, A., Frank, E., Doman, J., and Miller, M. Inventory of complicated grief: A scale to measure maladaptive symptoms of loss. Psychiatry Research 59, 1 (1995), 65 -- 79.Google ScholarCross Ref
- Rando, T. A. Treatment of Complicated Mourning. Research Press, 1993.Google Scholar
- Robinson, E., M., Riley, J., D. Myers, C., Sadler, I., Kvaal, S., Geisser, M., and Keefe, F. The coping strategies questionnaire: A large sample, item level factor analysis. The Clinical Journal of Pain 13, 1 (04 1997), 43--9.Google ScholarCross Ref
- Sandberg, S., and Grant, A. Option B: Facing Adversity, Building Resilience, and Finding Joy. Alfred A. Knopf, 2017.Google Scholar
- Stanford News. Text of Steve Jobs' Commencement address (2005). http: //news.stanford.edu/2005/06/14/jobs-061505/.Google Scholar
- Strobe, M., and Schut, H. The dual-process model of coping with bereavement: Rationale and description. Death Studies 23 (1999), 197--224.Google ScholarCross Ref
- Stroebe, M. S., Hansson, R. O., Schut, H., and Stroebe, W., Eds. Handbook of bereavement research and practice: advances in theory and intervention. American Psychological Association, 2008.Google ScholarCross Ref
- Swartwood, R. M., Veach, P. M., Kuhne, J., Lee, H. K., and Ji, K. Surviving grief: An analysis of the exchange of hope in online grief communities. OMEGA - Journal of Death and Dying 63, 2 (2011), 161--181. PMID: 21842664.Google Scholar
Index Terms
- Modern Bereavement: A Model for Complicated Grief in the Digital Age
Recommendations
Emotion regulation in bereavement: searching for and finding emotional support in social network sites
Online Memorial CulturesIn an age of rising impact of online communication in social network sites SNS, emotional interaction is neither limited nor restricted by time or space. Bereavement extends to the anonymity of cyberspace. What role does virtual interaction play in SNS ...
Exploring remembrance and social support behavior in an online bereavement support group
CSCW '13: Proceedings of the 2013 conference on Computer supported cooperative workDesigning interactive systems that sensitively engage with end of life issues is a key challenge for CSCW as more and more people turn to the Internet to grapple with the realities of death. However, there are few studies that document how specific ...
A community for grieving: affordances of social media for support of bereaved parents
Online Memorial CulturesThe purpose of this paper was to study bereaved parents' use of a closed peer grief support community on Facebook and the features of the community that are important to them. The death of a child is an uncomfortable subject in most contemporary ...
Comments