Living Memory Home: Understanding Continuing Bond in the Digital Age through Backstage Grieving

Prolong Grief Disorder (PGD) is a condition in which mourners are stuck in the grief process for a prolonged period and continue to suffer from an intense, mal-adaptive level of grief. Despite the increased popularity of virtual mourning practices, and subsequently the emergence of HCI research in this area, there is little research looking into how continuing bonds maintained digitally promote or impede bereavement adjustment. Through a one-month diary study and in-depth interviews with 17 participants who recently lost their loved ones, we identified four broad mechanisms of how grievers engage in what we called ”backstage” grieving (as opposed to bereavement through digital public space like social media). We further discuss how this personal and private grieving is important in maintaining emotional well-being hence avoiding developing PGD, as well as possible design opportunities and challenges for future digital tools to support grieving.

[1]  Christopher G. Davis,et al.  "Thanks for sharing that": ruminators and their social support networks. , 1999, Journal of personality and social psychology.

[2]  Abigail Sellen,et al.  Passing on & putting to rest: understanding bereavement in the context of interactive technologies , 2010, CHI.

[3]  Kristen Wright,et al.  The app generation: How today’s youth navigate identity, intimacy, and imagination in a digital world , 2016, New Media Soc..

[4]  Johan Redström,et al.  Slow Technology – Designing for Reflection , 2001, Personal and Ubiquitous Computing.

[5]  W. Stroebe,et al.  Continuing bonds in adjustment to bereavement: Impact of abrupt versus gradual separation , 2012 .

[6]  J. Wetherell Complicated grief therapy as a new treatment approach , 2012, Dialogues in clinical neuroscience.

[7]  Melissa D Irwin,et al.  Mourning 2.0—Continuing Bonds Between the Living and the Dead on Facebook , 2015, Omega.

[8]  S. Nolen-Hoeksema Ruminative coping and adjustment to bereavement. , 2001 .

[9]  D. Klass,et al.  Continuing Bonds : New Understandings of Grief , 1996 .

[10]  Gordon Bell,et al.  Passive capture and ensuing issues for a personal lifetime store , 2004, CARPE'04.

[11]  Danny Miller,et al.  Loss and material culture in South London , 2009 .

[12]  D. Kidd The Happiness Effect: How Social Media is Driving a Generation to Appear Perfect at Any Cost , 2018, Contemporary Sociology: A Journal of Reviews.

[13]  Angela Ka-yee Leung,et al.  Putting Their Best Foot Forward: Emotional Disclosure on Facebook , 2012, Cyberpsychology Behav. Soc. Netw..

[14]  A. Wagner,et al.  Do not Click “Like” When Somebody has Died: The Role of Norms for Mourning Practices in Social Media , 2018 .

[15]  V. Kress,et al.  Resolving Child and Adolescent Traumatic Grief: Creative Techniques and Interventions , 2010 .

[16]  Jeffrey Dean Webster,et al.  Critical advances in reminiscence work : from theory to application , 2002 .

[17]  Aisling Kelliher,et al.  Engaging with Death Online: An Analysis of Systems that Support Legacy-Making, Bereavement, and Remembrance , 2016, Conference on Designing Interactive Systems.

[18]  Tony Walter,et al.  New mourners, old mourners: online memorial culture as a chapter in the history of mourning , 2015, New Rev. Hypermedia Multim..

[19]  James W. Green Death, Memory and Material Culture , 2002 .

[20]  I. Farver-Vestergaard,et al.  Prevalence of prolonged grief disorder in adult bereavement: A systematic review and meta-analysis. , 2017, Journal of affective disorders.

[21]  Tony Walter,et al.  Processes of grieving: How bonds are continued. , 2001 .

[22]  Elaine Kasket Ma,et al.  Continuing bonds in the age of social networking: Facebook as a modern-day medium , 2012 .

[23]  Wan Jou She Toward empowerment : screening prolonged grief disorder in the first six months of bereavement , 2018 .

[24]  Clive Seale,et al.  Constructing Death: The Sociology of Dying and Bereavement , 1998 .

[25]  J. Bowlby,et al.  Attachment and Loss. Vol. 3. Loss, Sadness and Depression . By John Bowlby. (Hogarth Press and Institute of Psychoanalysis, 1980.) £12.00. , 1981, Journal of Biosocial Science.

[26]  G. Bonanno,et al.  The varieties of grief experience. , 2001, Clinical psychology review.

[27]  T. Walter,et al.  Does the Internet Change How We Die and Mourn? Overview and Analysis , 2012, Omega.

[28]  C. R. Snyder,et al.  Getting Unstuck: The Roles of Hope, Finding Meaning, and Rumination in the Adjustment to Bereavement among College Students , 2005, Death studies.

[29]  Abbe E. Forman,et al.  R.I.P.: Remain in perpetuity. Facebook memorial pages , 2013, Telematics Informatics.

[30]  G. Hagman Mourning: a review and reconsideration. , 1995, The International journal of psycho-analysis.

[31]  Robert E. Pinsker,et al.  Alone Together: Why We Expect More from Technology and Less from Each Other. , 2012 .

[32]  Dochterman,et al.  Nursing interventions classification (NIC). , 1992, Medinfo. MEDINFO.

[33]  J. Schüler,et al.  Effects of written emotional expression: the role of positive expectancies. , 2007, Health psychology : official journal of the Division of Health Psychology, American Psychological Association.

[34]  John Zimmerman,et al.  Designing for slowness, anticipation and re-visitation: a long term field study of the photobox , 2014, CHI.

[35]  Andreas Maercker,et al.  A 1.5-year follow-up of an Internet-based intervention for complicated grief. , 2007, Journal of traumatic stress.

[36]  K. Davis,et al.  Connecting 'Round the Clock: Mobile Phones and Adolescents' Experiences of Intimacy , 2015 .

[37]  Kelly G. McAninch,et al.  Grief Communication and Privacy Rules: Examining the Communication of Individuals Bereaved by the Death of a Family Member , 2016 .

[38]  Chanda Mayers-Elder On Grief and Grieving: Finding the meaning of grief through the five stages of loss , 2008 .

[39]  Charles Filanosky,et al.  Continuing Bonds, Risk Factors for Complicated Grief, and Adjustment to Bereavement , 2009, Death studies.

[40]  Ronald Baecker,et al.  A death in the family: opportunities for designing technologies for the bereaved , 2010, CHI.

[41]  S. B. Smith,et al.  Harriet Beecher Stowe: A Life. , 1995 .

[42]  Antonius C. G. M. Robben,et al.  Death, Mourning, and Burial : A Cross-Cultural Reader , 1991 .

[43]  P. Boelen,et al.  Narrative reconstruction therapy for prolonged grief disorder—rationale and case study , 2016, European journal of psychotraumatology.

[44]  V. Braun,et al.  Using thematic analysis in psychology , 2006 .

[45]  Charles Edgley,et al.  Death as Theater: A Dramaturgical Analysis of the American Funeral , 2017 .

[46]  Byron Sogie-Thomas On Grief and Grieving: Finding the Meaning of Grief through the Five Stages of Loss , 2006 .

[47]  Richard Banks,et al.  Experiences in Designing Technologies for Honoring Deceased Loved Ones , 2018, Design Issues.

[48]  Jocelyn M. DeGroot,et al.  Maintaining Relational Continuity with the Deceased on Facebook , 2012, Omega.

[49]  Rhonda McEwen,et al.  Virtual mourning and memory construction on Facebook: Here are the terms of use , 2013, ASIST.

[50]  C. Hall Bereavement theory: recent developments in our understanding of grief and bereavement , 2014 .

[51]  A. Papa,et al.  A randomized controlled trial of an internet-based therapist-assisted indicated preventive intervention for prolonged grief disorder. , 2014, Behaviour research and therapy.

[52]  H. Schut,et al.  To Continue or Relinquish Bonds: A Review of Consequences for the Bereaved , 2005, Death studies.

[53]  P. Maciejewski,et al.  A case for inclusion of prolonged grief disorder in DSM-V. , 2008 .

[54]  C. Reynolds,et al.  The Role of Avoidance in Complicated Grief: A Detailed Examination of the Grief-Related Avoidance Questionnaire (GRAQ) in a Large Sample of Individuals with Complicated Grief , 2016, Journal of loss & trauma.

[55]  M K Shear,et al.  Traumatic grief as a risk factor for mental and physical morbidity. , 1997, The American journal of psychiatry.

[56]  Joachim Wolschke-Bulmahn Places of commemoration : search for identity and landscape design , 2001 .

[57]  David Kirk On the Design of Technology Heirlooms , 2008 .

[58]  G. Bonanno,et al.  Prolonged Grief Disorder: Psychometric Validation of Criteria Proposed for DSM-V and ICD-11 , 2009, PLoS medicine.

[59]  H. Prigerson,et al.  The influence of symptoms of prolonged grief disorder, depression, and anxiety on quality of life among bereaved adults , 2007, European Archives of Psychiatry and Clinical Neuroscience.

[60]  Kate Woodthorpe,et al.  Private Grief in Public Spaces: Interpreting Memorialisation in the Contemporary Cemetery , 2010 .

[61]  Corina Sas,et al.  Futures of digital death: Past, present and charting emerging research agenda , 2019, Death studies.

[62]  R. Malkinson,et al.  Cognitive Behavior Couple Therapy-REBT Model for Traumatic Bereavement , 2013 .

[63]  Tony Walter,et al.  A new model of grief: Bereavement and biography , 1996 .

[64]  S. Wallace The Denial of Death , 1979, Occupational health nursing.

[65]  R. C. Silver,et al.  Coming to terms with major negative life events. , 1989 .

[66]  Abigail Sellen,et al.  Technology heirlooms?: considerations for passing down and inheriting digital materials , 2012, CHI.

[67]  G. Bonanno,et al.  Continuing bonds and adjustment at 5 years after the death of a spouse. , 2003, Journal of consulting and clinical psychology.

[68]  D. Kahn,et al.  RECOVERY THROUGH RECONNECTION: A CULTURAL DESIGN FOR FAMILY BEREAVEMENT IN TAIWAN , 2004, Death studies.

[69]  Michael Massimi,et al.  Dying, death, and mortality: towards thanatosensitivity in HCI , 2009, CHI Extended Abstracts.

[70]  C J Sofka,et al.  Social support "internetworks," caskets for sale, and more: thanatology and the information superhighway. , 1997, Death studies.

[71]  Jed R. Brubaker,et al.  Legacy Contact: Designing and Implementing Post-mortem Stewardship at Facebook , 2016, CHI.

[72]  Janet R. Fallon Coping with loss. , 2000, Harvard men's health watch.

[73]  Jeffrey T. Hancock,et al.  I said your name in an empty room: grieving and continuing bonds on facebook , 2011, CHI.

[74]  Wendy Moncur,et al.  An emergent framework for digital memorials , 2014, Conference on Designing Interactive Systems.

[75]  John Romano,et al.  Your Digital Afterlife: When Facebook, Flickr and Twitter Are Your Estate, What's Your Legacy? , 2010 .

[76]  Xuan Zhao,et al.  See friendship, sort of: how conversation and digital traces might support reflection on friendships , 2012, CSCW.

[77]  Judith S. Olson,et al.  Distance Matters , 2000, Hum. Comput. Interact..

[78]  H. Schut,et al.  The dual process model of coping with bereavement: rationale and description. , 1999, Death studies.

[79]  Sang M. Lee,et al.  Assessing the Reliability, Validity and Adaptability of PSSUQ , 2005, AMCIS.

[80]  Louis Bailey,et al.  Continuing social presence of the dead: exploring suicide bereavement through online memorialisation , 2015, New Rev. Hypermedia Multim..

[81]  Cristiano Maciel,et al.  Digital Legacy and Interaction , 2013, Human–Computer Interaction Series.

[82]  E. Witztum Handbook of Bereavement Research-Consequences, Coping and Care , 2001 .

[83]  K. Turnhout,et al.  Communicating Commemoration , 2008 .

[84]  Roselyn J. Lee-Won,et al.  Who puts the best "face" forward on Facebook?: Positive self-presentation in online social networking and the role of self-consciousness, actual-to-total Friends ratio, and culture , 2014, Comput. Hum. Behav..