Conference PaperPDF Available

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


Abstract and Figures

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.
Content may be subject to copyright.
Living Memory Home: Understanding Continuing Bond in the Digital Age
through Backstage Grieving
WAN JOU SHE, Weill Cornell Medicine, United States
PANOTE SIRIARAYA, Kyoto Institute of Technology, Japan
CHEE SIANG ANG, University of Kent, United Kingdom
HOLLY G. PRIGERSON, Weill Cornell Medicine, United States
Prolong Grief Disorder (PGD) is a condition in which mourners are stuck in the grief process for a prolonged period and continue to
suer 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 identied 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.
CCS Concepts: Applied computing Health care information systems;Information systems Web applications.
Additional Key Words and Phrases: Prolonged Grief Disorder, Continuous Bonds, Digital Grieving, Thanatosensitive technology
ACM Reference Format:
Wan Jou She, Panote Siriaraya, Chee Siang Ang, and Holly G. Prigerson. 2021. Living Memory Home: Understanding Continuing Bond
in the Digital Age through Backstage Grieving. In CHI’21: ACM CHI Conference on Human Factors in Computing System,May 8–13, 2021,
Yokohama, Japan. ACM, New York, NY, USA, 22 pages.
Almost everyone will experience the loss of a loved one at some point in their lives. For those in mourning, specic 29
cognitive, emotional, behavioral, and social responses are normal and natural [
]. When symptoms of grief persist at
intense levels after a year post-loss, these symptoms have been associated with signicant distress and dysfunction
(e.g., suicidal ideation, poor sleep, depression and anxiety, problems at work and home). We have advanced diagnostic
criteria now recognized by the ICD-11 and DSM-5 for Prolonged Grief Disorder (PGD) [
]. PGD is characterized by
the symptoms of intense yearning, disbelief, feeling emotionally numb, lack of acceptance of the death, mistrust of other
people, and a decreased sense of self [
]. The point prevalence of PGD beyond six months post loss has been estimated
to be 10-15% [
]. Furthermore, suicidality, sleep disorders, physical illnesses, depression, anxiety, and substance use
disorders are associated with meeting diagnostic criteria for PGD [
]. At its core PGD is an attachment disturbance
– separation distress evoked leaves mourners alone, miserable and detached from others and the world around them.
Permission to make digital or hard copies of all or part of this work for personal or classroom use is granted without fee provided that copies are not
made or distributed for prot or commercial advantage and that copies bear this notice and the full citation on the rst page. Copyrights for components
of this work owned by others than ACM must be honored. Abstracting with credit is permitted. To copy otherwise, or republish, to post on servers or to
redistribute to lists, requires prior specic permission and/or a fee. Request permissions from
©2021 Association for Computing Machinery.
Manuscript submitted to ACM
CHI’21, May 8–13, 2021, Yokohama, Japan She et al.
The problem is further compounded by the barriers some people may face in accessing the appropriate channels to
mourn the passing of their loved ones; this may be due to mobility constraints (e.g. home bound patients with severe
health conditions) or legal mental health act restrictions (e.g. patients in secure psychiatric care).
As digital technologies have become commonplace, many bereaved people now use social media, personal blogs
and other websites to express their feelings and thoughts when they mourn, and wish to memorialize their lost loved
ones digitally [
] [
]. They are often engaged in activities such as posting on the website of the deceased , expressing
yearning for and missing them, seeking guidance from the deceased, trying to "communicate" with and honoring them,
recalling fond memories, uploading photographs-videos or creating online websites to commemorating the deceased
]. These practices are now considered by many researchers as a form of continuing bonds in the digital era. [
Continuing bonds are ongoing relationships between the bereaved and the deceased [
]. Researchers have also
described the continuing bonds as unilaterally continuing relationship of the bereaved with the deceased [
]. Due to
the broadness of this denition, many dierent experiences in the mourning period have been regarded as continuing
bonds. For example, experiences such as seeing the deceased, hearing their voice, feeling their touch physically, using
or keeping their possessions, having a dream of them, looking at the photographs, visiting the cemetery, talking to
them, going to places they used to go, adopting the personal characteristics of the deceased and acting like them, taking
them as a role model, feeling the inuence of the deceased on their current identity, thinking about what they would
have done while making a decision, are considered as continuing bonds experiences [
]. Despite the increased
popularity of virtual mourning practices, there is little research looking into whether continuing bonds maintained
digitally promote or impede bereavement adjustment.
Using Living Memory Home (LMH, a custom-made web-based application to honour the deceased person’s memory)
as a digital probe, supported with in-depth semi-structured interviews, we examined how bereaved visitors to the LMH
managed their private, intra-personal grieving. Our aim was to explore design opportunities and challenge to facilitate
backstage grieving, helping people to continue bonding with the deceased as a way of coping. The LMH is based on
the idea that maintaining a continuing bond through posting and interacting with a website [
] in which the
bereaved person honors the deceased relative by sharing photographs, music and other memories, is therapeutic (i.e.,
associated with reduction in intensity of symptoms of PGD).
Pursuant to Massimi and Charise’s introduction of thanatosensitivity in technology [
], designing technology for the
end of life and grief has become the subject of a group of HCI researchers [
]. In the past decade,
subsequent interest elds include methods to manage and archive digital legacy [
], utilizing technology to
remember and pay respect to the deceased [
] and mediating the emotional bonds with the deceased [
]. In
addition to the studies in HCI eld, some clinical researchers such as Wagner et al. [
], Litz et al. [
] and She et al. [
further examine the implementation of technology in internet-based cognitive behavioral therapy or grief self-help. The
primary outcomes of some of the studies suggest that involving technology can potentially facilitate better intervention
outcomes but require active engagement of the therapists or larger scale assessment of its ecacy. More works are
certainly needed in validating the previous ndings and further enhance the tools.
There is a large and growing literature on bereavement from the sociological, psychological and anthropological
perspectives. This literature has touched on topics such as the impact of death on relationships with kin [
], the idea
of "social death" with an emphasis on culturally acceptable ways for people to grieve [
], as well as psychological
processes following the death of a loved one [
]. Of relevance to the present study is the research examining the
Living Memory Home: Understanding Continuing Bond in the Digital Age through Backstage Grieving CHI’21, May 8–13, 2021, Yokohama, Japan
important role of physical objects, as well as the private and public space in which these objects are spatially organised
in supporting processes of memorializing the deceased [
]. Research has highlighted the communicative, spatial
and physical values [
] of memorial places and objects, designed for the bereaved to express their grief, remember the
deceased and receive support from the community.
Given the pervasiveness of digital technologies in almost all aspects of our everyday life, there is an increasing
interest in the emergent use of the internet to honour and memorialize deceased loved ones. As a result, a key research
direction of HCI studies of death and bereavement is the investigation of how digital technology is appropriated and
used to remember and honor the deceased, with an emphasis on understanding commemoration via computer-mediated
communication as well as people’s relationship with digital artefacts in the process of grieving. Early studies [
reported the use of online forums and chat rooms as virtual spaces for social support for the bereaved, where people
share stories about their deceased loved ones. More recently, driven by the goal to explore new possibilities in technology
design to enable people to be more expressive in engagement with online bereavement tools, empirical work involving
surveys and in-depth interviews has been carried out to understand how bereavement is experienced in the context
of digital technology [
]. These studies highlight the direct way digital technology has been used to support
bereavement, by bringing friends and families from many geographically dispersed locations to "remember together,
even when apart." More interestingly, they also provide design directions for technologies currently used by living
people to consider how people will be represented digitally after their deaths, to better facilitate the grieving process
of surviving families and friends. Following these, social networking sites such as Facebook have implemented "post-
mortem" prole features, providing a personal archive of the deceased, as well as a virtual space for online memorial
practices. Brubaker and Callison-Burch 2016 outlined three approaches to post-mortem digital prole management: i)
Conguration-Based: enables users to make decisions pre-mortem about what the system should do after their deaths;
ii) Inheritance-Based: transfers ownership of digital artifacts from the deceased to an heir; iii) Stewardship-Based:
focuses on the responsibilities to care for the deceased loved one and the grieving community.
Among these approaches, technology inheritance is perhaps the most studied within the HCI community, where
researchers contrast and compare inheritance of digital artefacts with their physical counterparts, shed light onto issues
such as digital persistence, and how technology can be designed to gain sentimental value as this inter-generational
digital heirlooms is passed down across multiple generations [
]. Designers of such technology will need to consider
issues regarding the tension between "public vs private" data, and the "physical vs virtual" nature of the technology.
Researchers also point to the importance of ’personalization’ of artifacts (e.g. unique handwriting vs generic typing)
which make them more meaningful and valuable to the bereaved [50].
Given the sensitive and personal design space required of online tools addressing bereavement, some HCI researchers
have argued for a value-driven design approach to understand the ethical, cultural and socio-technical issues in
designing technologies for the bereaved [
]. There is research on supporting mourners in dicult times through smart
physical objects, following the ’Ubiquitous Computing’ design paradigm, such as “tilting picture frames” and “mourning
stones” which communicate family commemoration across time and space [
]. These projects focused on developing
technologies for "implicit communication" between mourners to create a sense of togetherness in the bereavement
process in a culturally acceptable manner. Furthermore, research has extended the work in lifelogging [
], which helps
individuals to capture and reect on their life experiences, in order to support "afterlife" logging for the bereaved. This
allows friends and families to appropriate the logged data to support reection, mourning, and commemoration.
Although emerging studies in HCI have examined user and design challenges of digital technology for bereavement,
to the best of our knowledge, there is currently no research of which we are aware that examines how maintaining
CHI’21, May 8–13, 2021, Yokohama, Japan She et al.
bonds using digital technology relates to the intensity of grief of bereaved people, i.e. how and if such technology help
people cope with grief. Of course, reminiscing is important to the mourners, but it is unclear whether the "continued
bonds" is always appropriate, as a psychological goal in grieving is to reach "closure", i.e. coming to terms with the fact
that the deceased is no longer alive.
Furthermore, most research in digital mourning has so far focused on so-called "frontstage" grieving, i.e. ritu-
als/practices which involve observances and/or other participants, such as funerals (virtual or physical), memorials and
storytelling with friends and families, etc. A great deal of grief management happens backstage where individuals who
are grieving often isolate themselves so as to grieve alone. In the era of social media, what would have been backstage
in the past may well become frontstage in forms of (semi) public Twitter or Facebook posts. The horrible details of a
suicide, the dislike of the deceased by some people, the conspiracy that a family member was responsible, or whatever
private information or speculation can quickly spread and known by many. This is the unpleasant consequence when a
member of the audience inadvertently enters the backstage. Therefore, we need to ensure that people have an outlet for
backstage as well frontstage grieving digitally, in order to facilitate positive continued bonding experiences. Current
HCI studies explored digital tools which help people invoke the intimate bonds of social relationships [
], yet it
remains undetermined how and indeed whether continuing bonds and rituals experienced in the context of digital
technology promote the understanding of loss, reduce symptoms in the mourning process and facilitate adjustment.
3.1 Study Procedure
In this study, we recruited participants from those who had lost their loved ones in the last 3 years and asked them to
use the Living Memory Home (LMH) for a one-month period. We excluded individuals who were under 18 years of
age and did not live in the New York Metropolitan area. This was necessary to ensure that participants would have
access to local mental health referral services during the study if needed. In addition, participants who were vulnerable
(e.g., prisoners, pregnant women, children or any other group of users that might be especially vulnerable and require
special consideration) or exhibited suicidal ideation were also deemed ineligible for the study. To recruit participants,
yers were posted around a medical university hospital in the US and around residential buildings in the surrounding
area. Participants who requested to participate in the study were invited to the center for a pre-screening interview. A
bereavement researcher and mental health professional carried out the pre-screenning process and assessed the suicide
risk of the participant (using questionnaires such as the PG-13 to assess grief intensity [
]). Afterwards, the researcher
explained the purpose of the study, gave instructions on how the LMH could be used and addressed participants’
questions prior to them signing the informed consent form. Participants were also told that during the study, they
would receive a weekly follow-up call from a mental health professional to monitor their emotional well-being. If the
participant became severely distressed as a result of study, a project member would reach out to evaluate the situation
and provide the participants with the contact information of a study-aliated mental health professional to ensure that
they receive the psychological care they need.
After agreeing to enroll in the study, each participant was asked to complete a 1-month session with the LMH that
included 7 days of mandatory login during the rst week and afterwards a 3 week period where they were able to
use the system freely. In the rst 7 days, participants were required to set up their memorial space in the LMH and
answer at least 2 question prompts in the writing exercise. There were in total 7 sets of question prompts that were
designed to elicit participants’ memories about the deceased loved ones (e.g., "My most treasured memory of you is...")
Living Memory Home: Understanding Continuing Bond in the Digital Age through Backstage Grieving CHI’21, May 8–13, 2021, Yokohama, Japan
Fig. 1. Living Memory Home memorial space.
and encourage them to explore the dierent types of memories (e.g., "What I have always wanted to tell you is..."). At the
end of the study, semi-structured interviews were conducted with the participants. The topics which were covered in
the interviews are described in detail in section 3.4. Participants who complete all the study activities received $100.00
as compensation. Overall, the study was carried out over a period of 6 months and ethical approval was granted by
the Institutional Review Board at [a private research university in the USA] (IRB Number 1810019629). To ensure data
security, the system went through extensive vulnerability testing and the data was stored on a HIPAA-compliant server
(a server which implements strict technical safeguards to prevent unauthorized access and provides data protection for
sensitive patient data according to the Health Insurance Portability and Accountability Act in the US)
3.2 Participants
A total of 24 participants had initially enrolled in the study. 4 of the participants had dropped out before completion.
This left 20 participants who completed the clinical study of LMH. Overall, 9 participants were male and 11 were female.
The average age of the participants were 42 (Mean=41.9, SD=18.79) years. 17 participant had lost a family member, 2
lost a relative and 1 participant lost a friend within the last 24 months. Based on the PG-13 questionnaire [
] that was
administered in the pre-screening stage, 4 participants experienced PGD (Prolonged grief disorder) symptoms based on
the PG-13 score threshold of 30, and 16 participants experience the normal level of grief as indicated by their PG-13
score (Mean=23.25, SD=8.77). After the 1 month period of using the application, 17 users agreed to participate in the
interviews. The characteristics of these 17 participants are shown in Table 1.
3.3 Study Apparatus: The Living Memory Home Web Application
We developed the Living Memory Home (LMH) web application with the aim of providing people in grief with a virtual
place where they could continue their bond with the deceased by honoring, memorializing and reminiscing about them.
CHI’21, May 8–13, 2021, Yokohama, Japan She et al.
Table 1. The Demographics and characteristics of the participants
Participant ID Age Gender Ethnicity Person(s) Lost
Experience with tech in the grief con-
2 22 Male Asian Older brother Not applicable
6 60 Female White Mother
Used phone calls. Feels social media is
7 68 Male White Mother
Used Facebook to announce the loss and
obtain support
8 69 Female White Mother
Posted on a blog and obituary website.
Thought social media was inappropriate
for grief.
9 56 Female White Father & Mother
Uploaded photos and wrote on a blog.
Posted messages on Facebook.
10 41 Female White Mother
Not applicable. Preferred to keep it for
12 34 Male Asian Friend
Posted photos of the lost one’s travels
on social media
13 35 Female Hispanic or Latino Father
Posted photos and songs on Facebook
and received support from friends and
15 39 Male White Fiance
Visited the deceased’s Facebook page
and posted photos and videos.
16 34 Male Asian Mother
Not applicable. Did not feel the need to
17 25 Female Asian Grand father
Posted photos to make a story on Insta-
gram. Felt neutral and no help by doing
19 52 Male African American
or Black Mother
Posted messages on Facebook and felt
good to know he had support
20 31 Female White Grand mother
Not applicable. Did not want to disclose
loss online.
21 22 Male Hispanic or Latino Father
Not applicable. Did not need support
from people he was not closed to
22 59 Female White Brother
Put up a memorial website for people to
post on it. Post messages on Facebook
and felt comforting when people com-
mented with supportive messages.
23 65 Female Hispanic or Latino Father
Contacted siblings and share photos
and videos using WhatsApp. Hoped to
have more technology to support pri-
vate grief.
24 66 Male African American
or Black Step mother
Preferred to share grief with family and
friends verbally. Felt too much informa-
tion was shared on Facebook.
Living Memory Home: Understanding Continuing Bond in the Digital Age through Backstage Grieving CHI’21, May 8–13, 2021, Yokohama, Japan
Fig. 2. Living Memory Home writing exercise.
Fig. 3. Living Memory Home selecting home base exercise.
Overall, the LMH was created through a co-design process that incorporated feedback from 4 multidisciplinary experts
with research experience in grief study, mental healthcare and medical application development and stakeholders who
had experienced the loss of a loved one. The activities and features of LMH (e.g. writing exercises, digital mourning
space) were created based on best practices drawn from bereavement and grief literature (e.g., Neimeyer’s Techniques of
Grief Therapy [
] and Litz’s internet-based grief intervention in applying constructs of Cognitive Behavioral Therapy
]) which were further rened based on the expert’s eld experiences. In the LMH, users would have the opportunity
CHI’21, May 8–13, 2021, Yokohama, Japan She et al.
to create his/her own space where he/she could upload and “decorate” it with photographs, notes and shared memories
of the deceased and related memorabilia. This was designed to provide a controlled continuing bonds environment, as a
place where the bereaved user can engage in digital rituals related to their loss, express emotions and thoughts and
pay respects to the deceased. By memorializing the deceased, the LMH aims to alleviate the common concern among
bereaved individuals that they will forget their loved ones.
There are two major components in the Living Memory Home, the Memorial Space and the Desk. The Memorial
Space was designed as a peaceful and private space where the bereaved user can engage in rituals to pay respect to the
deceased. Users could decorate the space with candles, owers and the photo of the deceased. The Desk was designed
to provide a journaling space, with the left "page" showing the memorial activity logs of the user and the right "page"
showing question prompts related to the participants’ relationship and the thoughts they might have towards their
deceased loved ones. Figure 1 shows the screenshot for the memorial space and Figure 2 shows the screenshot of the
Desk page. Finally, Figure 3 shows the screenshot for the virtual home selection page.
3.4 Data Collection and Analysis
The semi-structured interviews were conducted by a researcher who was an expert on grief research. The interview was
divided into three major parts: (1) questions aimed at understanding the participants’ general experiences of grieving
on the internet, (2) questions aimed at gathering insights into how participants use LMH to conduct backstage grieving
activities and (3) questions which asked participants about the implications of LMH usage on their grief intensity,
continuing bonds and emotional well-being.
The researcher began the interview by asking participants to describe their grieving behaviors on the internet and
the digital instruments or websites that they had used to facilitate their grieving process. Afterwards, participants were
asked about their general experiences in using the LMH through open-ended questions. Researcher then prompted
participants to describe their experiences of using the two main components, the Memorial Space and the Desk. The
questions included open-ended usability questions derived from Post-Study System Usability Questionnaire (PSSUQ)
], questions related to their emotional status while using LMH and their feedback about the content of the journal
prompts. At the end of the interview, participants were asked about their grief intensity and perception of continuing
bonds with the deceased after using the LMH. The researcher also proactively asked them to assess whether the LMH
contributed to or detracted to their emotional well-being and whether there were aspects of LMH that could be benecial
or harmful for mourners like them. During the interviews, audio recording was carried out and notes were taken. In
total, we obtained approximately 17 hours worth of interview data.
The audio recordings from the interviews were then transcribed and anonymized. Thematic analysis (a qualitative
method frequently used for identifying, reporting and interpreting the repeated patterns of people’s opinions, views or
experiences [
] ) was used to analyze data from the interviews. Two expert HCI researchers and one medical researcher
collaboratively coded the transcripts. As part of the thematic analysis process, codes which exhibited similar patterns
were then grouped together and themes were generated from the recurring code groups. The coders reviewed and
critically discussed the themes and the underlying codes together until an agreement was reached on the nal themes
and we rened the codes and themes until saturation had been achieved. Overall, four themes emerged from our
analysis and are presented with quotations from participants in the paper.
Living Memory Home: Understanding Continuing Bond in the Digital Age through Backstage Grieving CHI’21, May 8–13, 2021, Yokohama, Japan
Through a thematic analysis, we have identied four themes of digital mourning that takes place mostly backstage in a
private space, helping people to continue bonding with the deceased as a way of coping. The themes are: i) Grief as a
private aair, ii) Control the negative grief narrative, iii) Linking the past to the present and iv) Digital "Pensieve". In
each theme, we describe our key observations, through the lens of existing literature and theories about death and
mourning. We place specic emphasis on the backstage nature of our observations, and discuss the implications of this
to the emotional well-being of the grievers.
4.1 Digital grieving as a private aair
Dealing with grief often requires the bereaved to continually reect on and recongure their personal relationship with
the deceased, come to terms with their loss and re-establish a meaningful sense of self [
]. Throughout the interviews,
participants frequently highlighted the importance of having a place where they could quietly mourn and reect on
their loss and freely express their emotions and thoughts towards the deceased without the concern of being observed.
While the role of social media and web-based memorials in providing a digital frontstage avenue for the “collective
mourning and remembrance for the deceased” has been well documented in literature [
], the results from our
study showed that for some participants, a key part of the grieving experience remains a private aair and that the
public nature of social media platforms do not always cater to their emotional needs for backstage grieving in the
digital era.
While social media allow users to easily share the grief experience and exchange messages of condolences [
], their
very nature as a (semi) public space makes it easy to overshare messages of support, sometimes leading to users to feel
that their loss may have been trivialized. As grief is considered an intimate aair for each individual, the perceived
casualization in which supportive messages are so quickly and eortlessly exchanged on social media makes them
seem disingenuous [
]. There is therefore an inherent conict between the slow process of grieving and healing, and
the ephemeral “here today, gone tomorrow” nature of social media interactions. As a result, participants would rather
reect on their loss either alone in a private setting or with the support of close family members and friends.
I guess personally, I don’t really need support from people that I’m not really that close with. Like just to hear things from
people online, Oh, I’m so sorry for your loss. Things like that. I don’t really need to hear that from people that aren’t super
close to me. (Participant 21, 22 Male, Lost Father)
Basinger et al [
] describe how bereaved individuals tend to develop a sense of ownership in their grief and establish
personalized privacy rules to govern how they share information about their loss. Some participants expressed their
avoidance of extreme emotions and uncomfortable interactions in the public space:
We tend to, you know, verbalize it and express it among family, friends and members and stu like that rather than going
on Facebook and, you know, broadcast it all over the world. (Participant 24, 66 Male, Lost Step Mother)
Indeed, social media are by and large designed to nurture a positive community in which excessive display of negative
emotions, especially those in the low arousal spectrum (e.g. miserable, ashamed, as opposed to high arousal negative
emotions such as angry) is frowned upon [
]. While this design intention is understandable, it has resulted in our
participants shying away from expressing their emotions openly and seeking emotional support from their loved ones
CHI’21, May 8–13, 2021, Yokohama, Japan She et al.
on social media. As such, users often self-edit the messages they wish to convey to their loved ones in such public
venues and self-censor their emotions on such platforms.
It’s not private, right? So there’s always that thought that it’s going to be read by someone and, you know, so there’s always
potentially going to be this like self editing and restriction (Participant 9, 56 Female, Lost father and mother)
These observations underline the challenges some users face when "interacting" with the deceased in digital public
spaces. On a social platform, users are unable to take full ownership in the memory and identity of their loved ones as
they have been shaped by the community. In addition, they found it dicult to fully control the narrative of how their
loved ones would be remembered. As such, the virtual representation of the deceased in these frontstage spaces run the
risk of being depersonalized [41].
The importance of a private grieving space is further illustrated by the way participants talked about customizing
their virtual mourning space through the LMH. In some cases, participants used the customization tool (e.g. to select
and decorate their virtual cabin and choose an appropriate view) to select an environment which was related to their
loved one to commemorate them (e.g. selecting a place which they felt they would have enjoyed).
I did choose [this view] because he used to love going to mountains...I like it that it was kind of associated with him because
he was the person who would always like to go on a mountain and all this hiking and forest. (Participant 12, 34 Male, Lost
However, to our surprise, we also observed participants who chose to create a quiet and relaxing virtual space as a
separate area from their daily life where they could be alone. Instead of constructing a virtual space that assumes the
role of a “virtual cemetery” which acts as a marked representation of the deceased (playing a similar role as cemeteries
in the physical world [92]), some participants created a space that act as a “virtual sanctuary”, a personal place which
they feel emotionally safe, calm and relaxing that would allow them to bond with their lost loved ones. The virtual
representation of these spaces help provide the ambience that encourages peaceful self reection and allows users to
contemplate the intimate issues involving their loved ones.
Uh, I love to come to, and I think cabins, have very warm places that you can relax. So it’s a good place for you to relax and
to think and to mourn, you could. if you have to laugh, you can laugh, have to cry and cry. So I liked that environment.
(Participant 23, 65 Female, Lost Father)
the cabin. .. .is kind of in a separate area based, you’ll be able to see the city out there...the candle and the quietness. So to
me that was a, it gives you that environment for you to be in touch with yourself. (Participant 21, 22 Male, Lost Father)
The rituals participants performed in the virtual space could also be considered a form of communication with the
deceased. These practices were often shaped by the religious background of the participants as they often perform
religious rituals that honor their loved ones based on their religious beliefs. These ritualistic spaces play the role similar
to that of a private shrine in the house.
Cause like in Korea I feel like, um, we need to commemorate death especially cause I think we do it cause we’re Buddhist
here, like my grandparents are Buddhists, I’m not Buddhist, but we put a lot of food on the table (Participant 17, 25 Female,
Lost Grandfather)
Living Memory Home: Understanding Continuing Bond in the Digital Age through Backstage Grieving CHI’21, May 8–13, 2021, Yokohama, Japan
Although private digital spaces can provide various channels through which mourners can engage in backstage
grieving, we must emphasize the importance of having a well “balanced” digital frontstage and backstage grieving
experience, where people are not completely withdrawn from the social space and "stuck" in private grieving alone.
4.2 Control the negative grief narrative
As a healthy mechanism of coping with grief, the bereaved individual often needs to deal with the negative emotions that
emerge from their loss experience. The practice of "cognitive restructuring" in which people are exposed to memories
of their negative experiences and then are encouraged to re-interpret them in a more functional manner, has been
commonly employed in a number of treatment approaches for Prolonged Grief Disorder (PGD). By retelling stories of
the deceased [
], grievers are able to better manage distressing emotions of past events (loss) and reassert their sense
of control by engaging in reinterpreting the implications of the event and coming to terms of the loss and grief. The
process of regaining control over the grief narratives involves constant cognitive re-framing and often requires support
from mental health professionals.
Interestingly, a recurrent theme which emerged from our interviews suggested that albeit being an emotionally
painful experience at times, our participants appreciated being urged as part of the LMH diary exercise to reect on and
confront the negative aspects of their past experiences with the deceased loved ones. While it is expected that grievers
generally prefer to engage with positive memories and experience positive emotions when remembering the deceased,
the interviews suggested that because participants were able to reect more deeply about their negative emotions, it
allowed them to better accept the negative memories as they were increasingly gaining control over their negative
grief narrative. Overall, we identied two key aspects of backstage grieving which contribute to this eect. The rst is
related to the way private spaces help provide participants with a safe emotional outlet for their grief, allowing them to
better identify and ooad their negative emotions. We observed a number of instances where participants were active
in expressing negative emotions which are generally dicult to disclose (such as those related to shame, regret and
guilt). Participants reported being more expressive and honest about negative or conicting memories, acknowledging
that they are in a private space which is safe for “depositing” the memories (see section 4.4 for further discussion on this
point). In some cases, participants reported that this process of disclosure had prompted more self-discovery, helping
bring to light negative emotions that were previously unknown to them.
I nd writing to be a wonderful means to, you know, to self reect, but also to deal with some of the whatever emotions that
might be hidden in your subconscious because they, they just come as you write. (Participant 23, 65 Female, Lost Father)
Some participants described this process of "ooading" their negative emotions as being relieving for them. Being
able to express oneself emotionally, in particular in relation to stressful or traumatic experiences has been shown to be
benecial to emotional well-being and physical health [
]. A similar eect was reported by participants in our study.
People who don’t have any tools right now and they’re just keeping all of their [negative] emotions and all of their thoughts
inside locked away until it’s too painful and unbearable. So you need to be able to write and talk and, and get that out.
(Participant 13, 35 Female, Lost Father)
Many people have resentments towards people that are past and didn’t have time to work that out. I’m a fan of, you know,
writing out that resentment and lighting a match to it. (Participant 9, 56 Female, Lost Father and Mother)
CHI’21, May 8–13, 2021, Yokohama, Japan She et al.
When you put things down, it relieves your mind of sort of mulling over those things. You don’t keep thinking about them
so much. If you write down your can stop your mind from going over and over and over the same material
(Participant 8, 69 Female, Lost Mother)
The second aspect is related to how the storytelling activity helps encourage a more balanced reconstruction of
their grief narrative, allowing participants to better accept the negative situations that occurred in the past. In this
regard, the narrative activity in the backstage setting encourages a more balanced reappraisal of their loss experience.
Participants indicated that this activity prompted them to further re-examine their shared experiences with the deceased
in its entirety, empowering them to both celebrate the positive moments and also confront and come to terms with the
negative aspects of their past actions and relationships.
I was in touch with some realities. I have no intention of saintify somebody just because they passed away. Nobody’s a Saint.
It’s just the reality of there were things that were very good and things that were not. (Participant 6, 60 Female, Lost mother)
You can forgive yourself about your bad memories because you remember the good stu, too...[This ] balanced the bad
feelings that I still had about myself. I was not good enough for [her] or I was not present for her. These feelings are were not
gone and I continue to feeling these things, but I think [the LMH] helped balance these feelings (I was not good enough in
some situations) with good memories (Participant 20, 31 Female, Lost grandmother)
This aspect of backstage grieving exposed participants to a narrative of their loss through a balanced reconstruction
of their experiences with their loved ones and asked them to elaborate in detail on the parts which had meaning for
them [
]. This allows the participants to re-frame the negative aspects of their past and assume control over their
continuing connections with the deceased, even when the memories are not positive.
4.3 Linking the past to the present
Another important aspect of reective backstage grieving is the private space it aords to mourners to explore past
memories in the context of their present life. For instance, our participants explored things their deceased loved ones
would have done or said in the current day-to-day life situations they are experiencing. Participants spoke of the
struggle they are facing presently, as they seek comfort from the past conversations and stories with the deceased
Like last month I was just attacked on the street [..] it just made me think like[...] yeah, this happened to me. And he’s
like, wait, if I got through, you’re going to get through it. He would know the perfect thing to tell me to calm me down
(Participant 13, 35 Female, Lost Father)
This present-past emotional engagement can be seen as continuing lifelogging as discussed in Massimi and Baecker
] which aptly maintained that “lifelogs do not become obsolete upon the death of the subject; rather, these databases
can become afterlifelogs and support reection, mourning, and commemoration”. In fact, our participants went beyond
“just” being a user of these databases; instead they become a co-creator of the lifelogging journey with the deceased,
and continue the eort by blending past stories with their current life narratives. From the interaction design view
point, “afterlifelogging” could move beyond ideas where users are viewed as passively absorbing past memories; instead
backstage grieving is a negotiation between past and present, where users create, revise and evaluate the bond between
their present selves and a certain memory fragment of the past.
Living Memory Home: Understanding Continuing Bond in the Digital Age through Backstage Grieving CHI’21, May 8–13, 2021, Yokohama, Japan
This resonates strongly with the idea of “digital inheritance”, tangible (e.g. smartphones, laptops, etc.) and intangible
(e.g. digital media les, social media proles) as described in Massimi and Baecker [
]. From our analysis, intangible
inheritance is more than digital artefacts such as digital photos, as our participants continue to bond with the deceased
to co-create their present experience by integrating the memories and stories of the past, through backstage grieving.
In a way, it is as if they “inherited” new-found perspectives and ways of living from the deceased, which allows them
to manage their grief and emotion. In the same way individuals can experience relief when this grieving emotion is
brought to the frontstage in forms of religious and cultural practices (e.g. funeral) [
], our participants were able to
better manage their emotion by bringing and integrating this grieving emotion into their present life.
I’m always thinking about my mom here [in Living Memory Home] and if I want to curse somebody out, I started thinking
about my mom and I just walk away. (Participant 19, 52 Male, Lost mother)
While intangible inheritance such as large amounts of digital photographs may simply be deleted by the family
members, this co-created experience, albeit intangible, is specically selected and curated, and is strongly connected to
the participants’ on-going life. It hence bears personal touches and carries special meaning, compared to, say, thousands
of digital photographs stored in a hard drive. Crucially, this is fundamentally consistent with Continuing Bond Theory
] which argues that grieving focuses on developing and nurturing a new relationship with the deceased, through
maintaining an inner representation of the deceased, as opposed to the dominant model that advocates for trying to
“get over” or learning to “let go” of a loved one. Furthermore, our participants frequently expressed the feeling of “being
with their loved ones”, while they are experiencing grief backstage. In this instance, their deceased loved ones play
the role of a “silent partner”, nodding a silent approval to their comments and sharing their grief and happiness. This
virtual connection perhaps helped shift the role of their loved ones from a “temporary communication partner” to more
of an “permanent guardian angel” who is present with them in daily life.
It really helped me to explore my relationship with him and it kind of made me feel better that now I’m thinking of him and
maybe he’s like watching from above and he’s like, Oh, okay, my granddaughter is thinking of me...I’m just thinking maybe
he’s glad that I’m thinking of him and maybe in the afterlife we can be friends.(Participant 17, 25 Female, Lost Grandfather)
When you’re writing it’s like you still feel the presence of that person if it makes any sense. Like, you know, I’m writing
awesome things about my mom.... I know she feels like it wasn’t spiritually, but like she’s still right here. (Participant 19, 52
Male, Lost mother)
Research in reminiscence oers some hints on the importance of past-present emotional engagement on the mourner’s
emotional well-being. As a therapeutic intervention mostly targeted at older people, reminiscence is “using the recall of
past events, feelings and thoughts to facilitate pleasure, quality of life, or adaptation to present circumstances” [
In a way similar to reminiscence, backstage grieving allows our participants to derive and construct meaning and
happiness from the past, hence facilitating adaptation in the present when they are immersing in the past memory
during bereavement. This grieving function allows people to redene their dicult past memories as a resource and a
basis for gratitude. However, one must be mindful that accessing past memories is not always benecial, as reminiscence
can have both positive and negative eects on mental well-being [
]. Some of our participants, while claiming that
they did not notice negative or harmful eects of using the LMH, cautioned against the potential risks for individuals
CHI’21, May 8–13, 2021, Yokohama, Japan She et al.
who could get "addicted" to remembering the past or the dangers of triggering excessive grief when using the LMH for
too long or without appropriate support.
The aspects that I think are potentially harmful from using memory home? Spending too much time in the memory
home....just like other people tailor their activities when they get addicted to um, video game or whatever. (Participant 6, 60
Female, Lost mother)
I could absolutely see it for maybe a more fragile user without support, you could maybe provoke some or reactivate some
[harmful] grief. But for me, I did not nd it harmful. (Participant 9, 56 Female, Lost Father)
4.4 Digital Pensieve
A key observation from our analysis points to the prevalence of using LMH as "digital pensieve
" to deposit the memories
of the deceased. Not unlike a public memorial page, this backstage capturing and storing of memories allows the
participant to mourn and honor the deceased by creating an enduring legacy or remembrance [
]. Unlike a memorial
however, which aims to engage others in grieving the deceased, often leading to social support, we found that the desire
of our participants to engage with backstage grieving - more specically in recording information about the deceased -
reects the need for rituals to do something not only for the deceased, but also for themselves. These private mourning
rituals “provide a structured response to insupportable feelings that, without outlet, might prove overwhelming” [
Death in the modern world is often accompanied by public bureaucratic rituals grievers have to conduct - with the
bank, insurance companies, social security - most of which involve termination and closure of one thing or another,
where any link of the deceased with the material world is severed. Therefore, the ritual of capturing digital memories
serves as an important mechanism for our participants to cope with the sense of guilt and fear of forgetting the deceased,
which underlines the unwillingness of many participants to “move on”; rather they actively seek to capture these
memories and incorporate them in their ongoing life. Some participants explicitly outlined the benet of LMH in getting
rid of the emotional burden of forgetting the memories by keeping them safely in the virtual space.
People think that they’re going to forget their loved one, but that it’s taboo to talk about it. Oh, you’re not over them yet. No.
You know, like, no, no. And this is the proof because I’m writing for them regularly ...that I’m going to keep them, keep them
alive in some form, you know? (Participant 9, 56 Female, Lost Parent)
Recording the information of the deceased may be a way to relieve the emotional pain the mourner experience, as
“irrational” mal-adaptive thinking, e.g. “that one must hold on to the pain because it is the only way to remember the
deceased “, could result in prolonged distress and depression [
]. Although the pervasiveness of social media means
that a lot of personal information is now available for its users, social media data do not always capture information
that reects a person’s life completely [
]. Especially for the older generations, social media information might be
patchy or even not available. Our participants spoke of the importance of capturing personal information about the
relationships with the deceased, key milestones and even the mundane aspects of daily life.
Those memories are still alive that we had such good times with her and everything else. She was like the, let’s say the social
buttery of the family. [She was like] let’s go to church, make sure you’re ready for church...celebrating Christmas and
holidays and Easter. (Participant 24, 66 Male, Lost Step Mother)
1a word borrowed from the children’s novel "Harry Potter", which refers to a magical object used to review memories.
Living Memory Home: Understanding Continuing Bond in the Digital Age through Backstage Grieving CHI’21, May 8–13, 2021, Yokohama, Japan
These stored memories, albeit sometimes containing private events which participants would not normally share at
the frontstage, serve as a bank of “skeleton stories” which can be accessed later to tell stories and for reminiscence.
These “skeleton stories” typically include: the moment of death, past events the participants experienced with the
deceased, or past events they didn’t know about but was told by others after the death, as well as hypothetical futures
of the deceased had they not died. These memories curated backstage can be accessed to tell stories at frontstage,
highlighting the dynamics and relationships between back and front stage grieving.
Interestingly, we observed that occasionally, storytelling can indeed be a backstage aair, directed not to other
mourners (e.g. friends and families), instead to the deceased. For instance, it is not uncommon for Facebook users to post
messages to the deceased [
]. Communication to the dead underlines the idea that relationships do not end because
they are not physically present, and many people sense the presence of the dead and perceive conversations with
them to be meaningful [
]. Perhaps this communication with the deceased can be characterized as a form of self-talk,
which has been argued to help reduce anxiety, allowing the bereaved to fulll their need to be part of a continuing
relationship [
]. As a therapeutic approach, engaging in positive self-talk related to bereavement-specic themes
could enhance self-esteem of the bereaved. It is claimed that even negative self-talk can be useful to help the bereaved
explore problems which might lead to a more hopefully cognitive schema [
]. The participants reported feeling as
if they were “having a conversation with the deceased” while writing in the online diary. These observations are in
line with previous ndings of research in digital grieving in which people see the deceased as a "virtual conversation
partner", and that in people’s mind, the communication may be “received”. As Kern et. al. [37] put it, “the dead live in
the virtual cloud, and can hear or read the messages from the living.
I think that it gave me the opportunity to see how I can use writing as a great way to speak with him. When I’m writing,
I’m speaking, I use you or use me. It’s almost like a conversation (Participant 23, 65 Female, Lost father).
So, I lost my mom in last November. The ritual of calling her daily was something that was probably one of the last things
to get used to not doing...So the memory home, it still gives you that opportunity [to talk to her]... when something happens
during the day or you’re stressed or you just want to talk to someone that you normally would speak to. (Participant 6, 60
Female, Lost Mother).
Why are digital memories and storytelling important to the emotional well-being of the bereaved? Lule [
] asserts
that people use narratives to “make sense of the world” (p. 273), our participants use narratives to make sense of
their loss. Stroebe and Schut [
] suggested that coping with loss requires more than confronting one’s grief, and that
coping with loss involves active eorts to structure memories and thoughts as well as to regain mastery over one’s
life. This is also in line with Hagman’s [
] claim that a key aspect of grieving is about restructuring of memories and
representations that allow for a continuing connection with the lost person. This backstage memory collection provides
materials for storytelling, where our participants relearn their world through rewriting the biographies of themselves
and the deceased, re-creating the role, self and identity [85].
So I think [the memories] are challenged but not aggressive. It’s like you have the opportunity to forget the bad memories
because you remembered the good (Participant 20, 31 Female, Lost grandmother)
CHI’21, May 8–13, 2021, Yokohama, Japan She et al.
I think exploring relationships with someone else. Like whether it’s negative or positive, whether it’s sad or happy. I think it
benets both of you and I’m glad, like I kinda like feel like I formed a new relationship with him (Participant 17, 25 Female,
Lost Grandfather)
As many aspects of our social lives are increasingly moving frontstage, thanks to the pervasiveness of social media,
our ndings shed some light onto some key aspects of backstage grieving in the digital age, an area which has been
neglected in the digital bereavement literature. In this section, we present the implications of our ndings, rst by
discussing the role of digital technology in backstage grieving, and then by examining how backstage grieving could
support PGD. Finally, we highlight potential negative issues and risks such as the dangers of "getting stuck" in grief.
5.1 Digital Technology in backstage Grief
Within the digital grief literature, most studies have thus far looked at how existing frontstage tools have been
appropriated to help users to create a social space for friends and families to commemorate the deceased. These studies
have discussed for example, the role of online memorials and social media platforms in supporting users to "establish
a grief community across time and space", where users can share their feelings about grief and exchange supportive
messages with one another [
]. While this is clearly important, many of our participants expressed a considerable
appreciation for an "emotionally safe" private space as part of their digital grieving experience. Our results underline
the value of providing a virtual space for backstage grieving centered around the bereaved individual (as opposed
to a frontstage space for friends and families); one that could be designed to provide a peaceful atmosphere to allow
mourners to continue intimate bonds with the deceased, away from public spectatorship.
The LMH provides the users with the means to customize the visual aspect of their personal grieving space. In the
context of backstage grieving, this personalization reects the characteristics of the deceased loved one and the nature
of their relationship with the mourners. While many online memorial sites oer a similar customization mechanism, it
is aimed towards frontstage grieving, e.g decorating an online space for the community to visit to show empathy and
support [
], instead of providing a soothing private space centered around the bereaved individual and their private
thoughts as well as the intimate memories with the deceased. In creating these spaces for backstage grief, the results
from our study also suggests the importance of providing mechanisms that allow users to control the more abstract
environmental factors surrounding the space (e.g. ambient sound, relaxing scenery). Crucially, some of our participants
also spoke about the inuence of their cultural and religious backgrounds; as such, the design of this space needs to
consider this sensitive nature of grieving practices.
As alluded to earlier, social media platforms are by and large designed to nurture a positive community and positive
self-presentation [
]. When appropriated as a tool for grieving, social media may have failed to provide a space
which protects the emotional vulnerability of users wishing to open up emotionally, particularly on deeply personal
matters relating to immense grief and loss [
]. Through the private space aorded by the LMH, some participants
cherished the liberation of being able to delve unreservedly into their emotions and memories, including negative ones,
in their grieving experience. For some, this has led to self-discovery and the willingness to re-examine their relationship
with the deceased. The backstage space allows users to deal with the loss in their own terms, helping them avoid the
"coping paradox" that has been mentioned in grief studies on online social spaces (e.g. users being caught o guard by
new distressing information about the deceased or being reminded of their presence too regularly while trying to cope,
Living Memory Home: Understanding Continuing Bond in the Digital Age through Backstage Grieving CHI’21, May 8–13, 2021, Yokohama, Japan
thus increasing the pain of their death instead of reducing it) [
] or feeling the social pressure to grieve before they
are ready [86].
The interactions of the participants with the LMH had further reiterated the role digital technology could play in
the creation and transference of digital inheritance. In prior studies this inheritance tends to be in the form of digital
artifacts such as written content and photos of the deceased [
]. Such studies have highlighted the frontstage value
of being able to archive, share and pass on stories and memories of the deceased for the community (e.g. as proposed
on Facebook memorialize proles [
]). However, in the backstage context, our study also hinted as to how technology
might help pass on inheritances which are more intangible in nature, a notion which could be further explored. For
example, participants had described how by reecting on the memories of the past through the digital platform, they
were able to bring forward the wisdom and values from their loved ones and apply them to the challenges and struggles
they are encountering at present days.
Crucially, we acknowledge that grieving, online or oine, is a complex process, and some practices do not take
place strictly in the backstage or frontstage sphere; rather they move back and forth in a uid manner. Although our
research goal is to explore backstage grieving, time and again our participants discussed their private bereavement in the
wider context of digital grieving, quoting instances where public grieving suits certain emotional needs. This reection
provides some clues as to how public spaces for grieving could be designed to better facilitate the connection between
front and backstage grieving. As an example, the current grieving experience on social media of our participants had
left them lamenting about the intense casualization of online social support, in which very short messages can be
exchanged quickly and eortlessly. The economic model fueling the growth of social media further reinforces the
design for “fast and shallow” human interaction.
We therefore believe it would be important to adopt a “slow design” paradigm to support deeper interactions in digital
grieving. The "slow design" movement is concerned with technology design that will endure and develop over time
], through supporting experiences of expression, where slowness can create an appropriate pace of interaction that
supports self-reection. For instance, Odom et. al. 2014 studied how the past-paced nature of digital photo production
can be "slowed down" to build users’ anticipation and inuence their perceptions of value and meaning when interacting
with digital photos. In a similar vein, one should balance the “fast design” of frontstage online social support, and the
“slow design” of backstage reective grieving, e.g. online social media proles of the deceased could be switched to a
dierent mode which is more conducive to reective relationships, rather than high volumes of “continuous stream” of
rapid interactions.
5.2 Backstage Grief in the Context of PGD and its Risks
There is no denying that grieving often triggers certain negative emotions on the extreme spectrum, and social media
implicit design rules generally shun negative emotions in favour of promoting a positive online community [
]. However,
exposure to negative memories could be useful in encouraging the bereaved individuals to explore and confront their
past challenges, a process which could lead to positive cognitive restructuring[
]. Indeed, grieving has been understood
to be an experience of the loss in a repetitive and persistent manner, and it is believed that this “endless examination of
how and why the loss occurred” [7] can help the bereaved to recognise and accept the new reality of their life.
Many of our participants mentioned that they developed a positive outlook and the acceptance of the loss by
developing a new relationship with the deceased, through repeatedly engaging with the question prompts of the LMH,
where they were asked to confront their negative emotions. This shows a potential of backstage grieving in alleviating
the risk of PGD. Indeed, one of the primary diagnostic criteria of PGD is the pervasive yearning and longing for the
CHI’21, May 8–13, 2021, Yokohama, Japan She et al.
deceased [
]. Backstage grieving can serve as a mechanism to transform this maladaptive yearning into healthy
continued bond. Our question prompts were adapted from Neimeyer’s book Techniques of Grief Therapy [
], focusing
on meaning reconstruction through the process of corresponding with the deceased. Although our sample size is not
big enough for us to verify the eect, the overall positive responses of the participants towards this guided backstage
grief are worthy of future research.
The nature of an open digital shared space drives individuals to share contents mostly related to happy, positive
and successful lifestyles [
], whereas death is often considered a taboo subject and hence disclosing grief could make
people feel uneasy in a social context [
]. Even though many of our participants were open to sharing their grief in a
digital public space, at least three participants specically mentioned that the messages about their losses shared on
social media required a certain level of curating and were rather supercial. As previous studies suggested, avoidance
to confront negative emotions could lead to more intrusive thoughts of the deceased, poor health outcome and elevated
risk of PGD in the long run [
]. While modern digital platforms emphasize connectivity and sharing, in the context
of bereavement, our study points to the importance of oering a digital private space which can help provide a safe
emotional outlet to facilitate the healthy engagement with negative narratives and emotions.
It is however, worth noting that the cognitive process of repetitive self reection is closely related to another
phenomenon, known as rumination, which has been empirically shown to lead to poor bereavement outcomes[
Bereavement-related rumination is characterised by persistent, chronic and passive focus on the occurrence, causes,
and impacts of negative grief-related emotions and is shown to be a maladaptive process, and is conceptually related to
prolonged grief [
]. What if this private space became a space where mourners got into a perpetual cycle of ruminating
and brooding about the negative events? Furthermore, with the advances of new technologies, such as virtual reality,
one must be cautious that such explicit interactions with the deceased in an highly immersive environment may not be
desirable as the mourners may run the risk of being “stuck” in the past [
]. This will be an interesting future research
direction, albeit one not without its ethical challenges.
It is therefore challenging to strive for a healthy design balance, lest users become adrift in the endless cycle of
negative self-talks and grief-related rumination [
]. There are some directions to consider when designing digital
technology to support private grieving. Firstly, there are dierent types of engagement with negative emotions. Those
who are engaged with repetitive thoughts but with a purposeful processing of negative emotions and an end goal
of resolution are more able to adapt positively. Those who are engaged with a ruminative process, characterized by
repeated focus on negative emotions related to the death and what these emotions mean (self-talks such as “will I
ever get over this?’), are more likely to get “stuck” and not progress towards nding a solution that lessens these
negative feelings. It is crucial that design for digital grieving considers carefully how mourners interact and confront
negative emotions. For instance, designers should be mindful of excessive interactions which “may take on a distinctly
ruminative character, with repetitive focusing on how awful it is that [their] loved one died and how bad it feels to
]. Secondly, we should acknowledge that mourners may have dierent personal circumstances and may be
in dierent stages of the grieving process. Their interactions with negative emotions, either through frontstage or
backstage channels, may evolve to allow them to adapt positively to the grieving process. For instance, [
] found a
fairly robust inverse correlation between “making sense of why the death happened” and grief-related rumination,
for those who had experienced the death more recently (less than one year). Apart from these, other factors such as
the relationships between the mourner and the deceased may also play a role in the grieving process. For example,
it is found that in the initial phase of bereavement, fathers are more likely to put their energies into practical issues
than mothers [
]. In the case of the death of a child, their age, personality, and the circumstances of the death could
Living Memory Home: Understanding Continuing Bond in the Digital Age through Backstage Grieving CHI’21, May 8–13, 2021, Yokohama, Japan
determine a child’s reaction to the loss of a sibling [
]. All these point to the diversity and complexity of grief, and
hence the challenge of designing digital technologies for backstage grieving to mitigate the risk of getting “stuck”.
Finally, it is also pointed out that by working through through negative emotions repeatedly, individuals come to
terms with it, allowing them to “gradually tolerate increasing doses of distressing aspects of the event” [
]. Perhaps
backstage grieving is more suitable for individuals who have moved on from the initial stage of grieving, and is more
ready to form a new relationship with the deceased. Having this private space help them to move forward. For mourners
who are still in the early stage of grief, frontstage oriented grieving might be more productive.
While digital technologies facilitate more social connectedness among individuals and their supporting communities,
they also introduce challenges to intimacy and in-depth communications due to the simplication of social support
into "liking" or brief comments on friends’ posts [
] and mediating intimacy through 24/7 connectedness [
In the context of digital bereavement loss, such frontstage interactions, despite having a positive implication to an
individual’s well-being and facilitating a sense of belonging, do pose serious limitations in expressing ones’ true feelings,
establishing private and intimate connection with the deceased and asserting control over the grief narratives. While
deceased loved ones are no longer physically present yet digitally "connected" to the mourners, our study uncovers the
possibility to design and utilize digital technology to facilitate an in-depth and intimate connection with the deceased, a
process we describe as backstage grieving.
Although the study allows us to further discuss the design opportunities for technologies that facilitate backstage
grieving, a few limitations should be mentioned. First, given the importance of cultural dierences, a larger sample
size which include participants from dierent locations around the world will be benecial to further validate the
ndings in our study. Second, the current design of LMH falls short in capturing the various cultural and religious
aspects, which limits us from understanding how continuing bonds can be facilitated by including cultural or ritualistic
mourning practices. Thirdly, the current study ran for a period of 1 month, and at least 6 months have passed after all
our participants experienced the loss. This suggests that their approach to remembering and coping with grief could
be quite dierent from the other phases such as pre-loss or early phase (< 6 month) of grief. Longer studies will be
necessary to enrich our understanding of backstage grieving and continuing bonds digitally with the deceased loved
ones through dierent phases of grief.
The work carried out in this paper is supported by the R21 National Institute of Mental Health (NIMH) research grant
(Grant number MH121886) as well as the R35 National Cancer Institute (NCI) research grant (Grant number CA197730).
We would like to thank Madeline Rogers for supporting and monitoring our study participants.
Louis Bailey, Jo Bell, and David Kennedy. 2015. Continuing social presence of the dead: Exploring suicide bereavement through online memorialisation.
New Review of Hypermedia and Multimedia 21, 1-2 (2015), 72–86.
Amanda W Baker, Aparna Keshaviah, Arielle Horenstein, Elizabeth M Goetter, Christine Mauro, Charles F Reynolds III, Sidney Zisook, M
Katherine Shear, and Naomi M Simon. 2016. 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. Journal of Loss and Trauma 21, 6 (2016), 533–547.
L Balmoral, WY Gong, and N O’Rourke. 2013. Reminiscence frequency predicts depressive symptoms but not life satisfaction 16-months later. In
Poster session presented at the 121st annual convention of the American Psychological Association, Honolulu, HI.
CHI’21, May 8–13, 2021, Yokohama, Japan She et al.
Erin D Basinger, Erin C Wehrman, and Kelly G McAninch. 2016. Grief communication and privacy rules: Examining the communication of
individuals bereaved by the death of a family member. Journal of Family Communication 16, 4 (2016), 285–302.
[5] Ernest Becker. 1997. The denial of death. Simon and Schuster.
Paul A Boelen and Holly G Prigerson. 2007. The inuence of symptoms of prolonged grief disorder, depression, and anxiety on quality of life among
bereaved adults. European archives of psychiatry and clinical neuroscience 257, 8 (2007), 444–452.
[7] J Bolby. 1980. Attachment and loss: Vol 3. Loss: Sadness and depression.
[8] George A Bonanno and Stacey Kaltman. 2001. The varieties of grief experience. Clinical psychology review 21, 5 (2001), 705–734.
[9] Virginia Braun and Victoria Clarke. 2006. Using thematic analysis in psychology. Qualitative research in psychology 3, 2 (2006), 77–101.
Jed R Brubaker and Vanessa Callison-Burch. 2016. Legacy contact: Designing and implementing post-mortem stewardship at facebook. In Proceedings
of the 2016 CHI conference on human factors in computing systems. 2908–2919.
[11] Evan Carroll and John Romano. 2010. Your digital afterlife: When Facebook, Flickr and Twitter are your estate, what’s your legacy? New Riders.
Dorthe Refslund Christensen and Kjetil Sandvik. 2013. Sharing death: Conceptions of time at a Danish online memorial site. Taming time, timing
death: Social technologies and ritual 1 (2013), 99–118.
[13] Victor G Cicirelli. 1995. Loss of siblings through death. In Sibling Relationships Across the Life Span. Springer, 185–200.
[14] V Conway and J Feeney. 1997. Attachments and grief: A study of parental bereavement. Journal of Family Studies 3 (1997), 36–42.
Jocelyn M Degroot. 2012. Maintaining relational continuity with the deceased on Facebook. OMEGA-Journal of Death and Dying 65, 3 (2012),
[16] Joanne McCloskey Dochterman and Gloria M Bulechek. 2004. Nursing interventions classication (NIC). Mosby Incorporated.
Meredith Edgar-Bailey and Victoria E Kress. 2010. Resolving child and adolescent traumatic grief: Creative techniques and interventions. Journal of
Creativity in Mental Health 5, 2 (2010), 158–176.
Nigel P Field and Charles Filanosky. 2009. Continuing bonds, risk factors for complicated grief, and adjustment to bereavement. Death Studies 34, 1
(2009), 1–29.
Nigel P Field, Eval Gal-Oz, and George A Bonanno. 2003. Continuing bonds and adjustment at 5 years after the death of a spouse. Journal of
consulting and clinical psychology 71, 1 (2003), 110.
[20] Pin Sym Foong and Denisa Kera. 2008. Applying reective design to digital memorials. SIMTech’08 (2008).
[21] Donna Freitas. 2017. The happiness eect: How social media is driving a generation to appear perfect at any cost. Oxford University Press.
[22] Ann Fruhling and Sang Lee. 2005. Assessing the reliability, validity and adaptability of PSSUQ. AMCIS 2005 Proceedings (2005), 378.
Howard Gardner and Katie Davis. 2013. The app generation: How today’s youth navigate identity, intimacy, and imagination in a digital world. Yale
University Press.
Jim Gemmell, Lyndsay Williams, Ken Wood, Roger Lueder, and Gordon Bell. 2004. Passive capture and ensuing issues for a personal lifetime store.
In Proceedings of the the 1st ACM workshop on Continuous archival and retrieval of personal experiences. 48–55.
Emily Getty, Jessica Cobb, Meryl Gabeler, Christine Nelson, Ellis Weng, and Jerey Hancock. 2011. I said your name in an empty room: grieving and
continuing bonds on facebook. In Proceedings of the SIGCHI Conference on human factors in computing systems. 997–1000.
Rebecca Gulotta, David B Gerritsen, Aisling Kelliher, and Jodi Forlizzi. 2016. Engaging with death online: An analysis of systems that support
legacy-making, bereavement, and remembrance. In Proceedings of the 2016 ACM Conference on Designing Interactive Systems. 736–748.
[27] George Hagman. 1995. Mourning: A review and reconsideration. International Journal of Psycho-Analysis 76 (1995), 909–925.
Christopher Hall. 2014. Bereavement theory: Recent developments in our understanding of grief and bereavement. Bereavement Care 33, 1 (2014),
[29] Elizabeth Hallam and Jenny Hockey. 2001. Death, memory and material culture. Unknown Publisher.
[30] Lars Hallnäs and Johan Redström. 2001. Slow technology–designing for reection. Personal and ubiquitous computing 5, 3 (2001), 201–212.
[31] Joan D Hedrick. 1995. Harriet Beecher Stowe: A Life. Oxford University Press.
[32] R Hertz. 2004. A Contribution to the Study of the Collective Representation of Death. Death, Mourning and Burial. A Cross-Cultural Reader.
Min-Tao Hsu, David L Kahn, Der-Heuy Yee, and Wei-Lun Lee. 2004. Recovery through reconnection: A cultural design for family bereavement in
Taiwan. Death studies 28, 8 (2004), 761–786.
John Dixon Hunt. 2001. Come into the garden, Maud": Garden art as a privileged mode of commemoration and identity. Places of commemoration:
Search for identity and landscape design. Washington, DC: Dumbarton Oaks (2001).
Melissa D Irwin. 2015. Mourning 2.0—Continuing bonds between the living and the dead on Facebook. OMEGA-Journal of Death and Dying 72, 2
(2015), 119–150.
Elaine Kasket. 2012. Continuing bonds in the age of social networking: Facebook as a modern-day medium. Bereavement Care 31, 2 (2012), 62–69.
Rebecca Kern, Abbe E Forman, and Gisela Gil-Egui. 2013. RIP: Remain in perpetuity. Facebook memorial pages. Telematics and Informatics 30, 1
(2013), 2–10.
[38] David Kirk and Richard Banks. 2008. On the design of technology heirlooms. SIMTech’08 (2008).
[39] Dennis Klass, Phyllis R Silverman, and Steven Nickman. 2014. Continuing bonds: New understandings of grief. Taylor & Francis.
D Klass and Tony Walter. 2001. Processes of grieving: how bonds are continued. In Handbook of Bereavement Research: Consequences, Coping, and
Care. American Psychological Association, 431–448.
[41] Sara Koktan. 2017. Death 2.0: Facebook memorial pages. Technical Communication Capstone Course 15 (2017).
Living Memory Home: Understanding Continuing Bond in the Digital Age through Backstage Grieving CHI’21, May 8–13, 2021, Yokohama, Japan
Elisabeth Kübler-Ross and David Kessler. 2005. On grief and grieving: Finding the meaning of grief through the ve stages of loss. Simon and Schuster.
Thomas A Langens and Julia Schüler. 2007. Eects of written emotional expression: The role of positive expectancies. Health Psychology 26, 2 (2007),
Roselyn J Lee-Won, Minsun Shim, Yeon Kyoung Joo, and Sung Gwan Park. 2014. 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. Computers in Human
Behavior 39 (2014), 413–423.
Brett T Litz, Yonit Schorr, Eileen Delaney, Teresa Au, Anthony Papa, Annie B Fox, Sue Morris, Angela Nickerson, Susan Block, and Holly G Prigerson.
2014. A randomized controlled trial of an internet-based therapist-assisted indicated preventive intervention for prolonged grief disorder. Behaviour
research and therapy 61 (2014), 23–34.
[46] Jack Lule. 1990. Telling the story of story: Journalism history and narrative theory. American Journalism 7, 4 (1990), 259–274.
Marie Lundor, Helle Holmgren, Robert Zachariae, Ingeborg Farver-Vestergaard, and Maja O’Connor. 2017. Prevalence of prolonged grief disorder
in adult bereavement: A systematic review and meta-analysis. Journal of Aective Disorders 212 (2017), 138–149.
[48] Cristiano Maciel and V Pereira. 2013. Digital legacy and interaction. Heidelberg, Germany (2013).
Ruth Malkinson and Therese Brask-Rustad. 2013. Cognitive behavior couple therapy-REBT model for traumatic bereavement. Journal of Rational-
Emotive & Cognitive-Behavior Therapy 31, 2 (2013), 114–125.
Michael Massimi and Ronald M Baecker. 2010. A death in the family: opportunities for designing technologies for the bereaved. In Proceedings of the
SIGCHI conference on Human Factors in computing systems. 1821–1830.
Michael Massimi and Andrea Charise. 2009. Dying, death, and mortality: towards thanatosensitivity in HCI. In CHI’09 Extended Abstracts on Human
Factors in Computing Systems. 2459–2468.
Rhonda N McEwen and Kathleen Scheaer. 2013. Virtual mourning and memory construction on Facebook: Here are the terms of use. Bulletin of
Science, Technology & Society 33, 3-4 (2013), 64–75.
Scott T Michael and CR Snyder. 2005. Getting unstuck: The roles of hope, nding meaning, and rumination in the adjustment to bereavement
among college students. Death studies 29, 5 (2005), 435–458.
Daniel Miller and Fiona Parrott. 2009. Loss and material culture in South London. Journal of the Royal Anthropological Institute 15, 3 (2009), 502–519.
Wendy Moncur and David Kirk. 2014. An emergent framework for digital memorials. In Proceedings of the 2014 conference on Designing interactive
systems. 965–974.
[56] Robert A Neimeyer. 2012. Retelling the narrative of the death. Techniques of grief therapy (2012), 86–90.
[57] Susan Nolen-Hoeksema. 2001. Ruminative coping and adjustment to bereavement. (2001).
Susan Nolen-Hoeksema and Christopher G Davis. 1999. " Thanks for sharing that": Ruminators and their social support networks. Journal of
personality and social psychology 77, 4 (1999), 801.
[59] Susan Nolen-Hoeksema, Judith Larson, and Judith M Larson. 2013. Coping with loss. Routledge.
William Odom, Richard Banks, David Kirk, Richard Harper, Siân Lindley, and Abigail Sellen. 2012. Technology heirlooms? Considerations for
passing down and inheriting digital materials. In Proceedings of the SIGCHI Conference on Human Factors in computing systems. 337–346.
[61] William Odom, Richard Harper, Abigail Sellen, David Kirk, and Richard Banks. 2010. 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. 1831–1840.
William Odom, Daisuke Uriu, David Kirk, Richard Banks, and Ron Wakkary. 2018. Experiences in designing technologies for honoring deceased
loved ones. Design Issues 34, 1 (2018), 54–66.
William T Odom, Abigail J Sellen, Richard Banks, David S Kirk, Tim Regan, Mark Selby, Jodi L Forlizzi, and John Zimmerman. 2014. Designing
for slowness, anticipation and re-visitation: a long term eld study of the photobox. In Proceedings of the SIGCHI Conference on Human Factors in
Computing Systems. 1961–1970.
[64] Gary M Olson and Judith S Olson. 2000. Distance matters. Human–computer interaction 15, 2-3 (2000), 139–178.
Tuvia Peri, Ilanit Hasson-Ohayon, Sharon Garber, Rivka Tuval-Mashiach, and Paul A Boelen. 2016. Narrative reconstruction therapy for prolonged
grief disorder—Rationale and case study. European Journal of Psychotraumatology 7, 1 (2016), 30687.
Holly G Prigerson, Andrew J Bierhals, Stanislav V Kasl, Charles F Reynolds, M Katherine Shear, Nancy Day, Laurel C Beery, Jason T Newsom, and
Selby Jacobs. 1997. Traumatic grief as a risk factor for mental and physical morbidity. American journal of psychiatry 154 (1997), 616–623.
Holly G Prigerson, Mardi J Horowitz, Selby C Jacobs, Colin M Parkes, Mihaela Aslan, Karl Goodkin, Beverley Raphael, Samuel J Marwit, Camille
Wortman, Robert A Neimeyer, et al
2009. Prolonged grief disorder: Psychometric validation of criteria proposed for DSM-V and ICD-11. PLoS
medicine 6, 8 (2009).
[68] Holly G Prigerson, Lauren C Vanderwerker, and Paul K Maciejewski. 2008. A case for inclusion of prolonged grief disorder in DSM-V. (2008).
Lin Qiu, Han Lin, Angela K Leung, and William Tov. 2012. Putting their best foot forward: Emotional disclosure on Facebook. Cyberpsychology,
Behavior, and Social Networking 15, 10 (2012), 569–572.
Kelly R Rossetto, Pamela J Lannutti, and Elena C Strauman. 2015. Death on Facebook: Examining the roles of social media communication for the
bereaved. Journal of Social and Personal Relationships 32, 7 (2015), 974–994.
Corina Sas, Miriam Schreiter, Monika Büscher, Fiorenza Gamba, and Alina Coman. 2019. Futures of digital death: Past, present and charting
emerging research agenda.
CHI’21, May 8–13, 2021, Yokohama, Japan She et al.
Henk Schut, Margaret Stroebe. 1999. The dual process model of coping with bereavement: Rationale and description. Death studies 23, 3 (1999),
Victoria Schwanda Sosik, Xuan Zhao, and Dan Cosley. 2012. See friendship, sort of: How conversation and digital traces might support reection on
friendships. In Proceedings of the ACM 2012 conference on Computer Supported Cooperative Work. 1145–1154.
[74] Clive Seale. 1998. Constructing death: The sociology of dying and bereavement. Cambridge University Press.
Wan Jou She. 2018. Toward Empowerment: screening prolonged grief disorder in the rst six months of bereavement. Ph.D. Dissertation. PhD Thesis,
Department of Industrial Design, Eindhoven University of .. ..
Carla J Sofka. 1997. Social support" internetworks," caskets for sale, and more: Thanatology and the information superhighway. Death Studies 21, 6
(1997), 553–574.
Margaret Stroebe and Henk Schut. 2005. To continue or relinquish bonds: A review of consequences for the bereaved. Death studies 29, 6 (2005),
Margaret S Stroebe, Georgios Abakoumkin, Wolfgang Stroebe, and Henk Schut. 2012. Continuing bonds in adjustment to bereavement: Impact of
abrupt versus gradual separation. Personal Relationships 19, 2 (2012), 255–266.
[79] Rosemary Tait and Roxane Cohen Silver. 1989. Coming to terms with major negative life events. Unintended thought (1989), 351–382.
[80] Sherry Turkle. 2017. Alone together: Why we expect more from technology and less from each other. Hachette UK.
Ronny E Turner and Charles Edgley. 1976. Death as theater: A dramaturgical analysis of the American funeral. Sociology & Social Research (1976).
Elise Van den Hoven, Wina Smeenk, Hans Bilsen, Rob Zimmermann, Simone de Waart, and Koen van Turnhout. 2008. Communicating commemora-
tion. Proc. of SIMTech 8 (2008).
Anna JM Wagner. 2018. Do not click “like” when somebody has died: The role of norms for mourning practices in social media. Social Media+
Society 4, 1 (2018), 2056305117744392.
Birgit Wagner and Andreas Maercker. 2007. A 1.5-year follow-up of an internet-based intervention for complicated grief. Journal of Traumatic
Stress: Ocial Publication of The International Society for Traumatic Stress Studies 20, 4 (2007), 625–629.
[85] Tony Walter. 1996. A new model of grief: Bereavement and biography. Mortality 1, 1 (1996), 7–25.
Tony Walter. 2015. New mourners, old mourners: Online memorial culture as a chapter in the history of mourning. New Review of Hypermedia and
Multimedia 21, 1-2 (2015), 10–24.
Tony Walter, Rachid Hourizi, Wendy Moncur, and Stacey Pitsillides. 2012. Does the internet change how we die and mourn? Overview and analysis.
OMEGA-Journal of Death and Dying 64, 4 (2012), 275–302.
[88] Jerey Dean Ed Webster and Barbara K Haight. 2002. Critical advances in reminiscence work: From theory to application. Springer Publishing Co.
Emily Weinstein and Katie Davis. 2015. Connecting’round the clock: mobile phones and adolescents’ experiences of intimacy. In Encyclopedia of
mobile phone behavior. IGI Global, 937–946.
[90] Emily C Weinstein and Robert L Selman. 2016. Digital stress: Adolescents’ personal accounts. new media & society 18, 3 (2016), 391–409.
[91] Julie Loebach Wetherell. 2012. Complicated grief therapy as a new treatment approach. Dialogues in clinical neuroscience 14, 2 (2012), 159.
Kate Woodthorpe. 2010. Private grief in public spaces: Interpreting memorialisation in the contemporary cemetery. In The Matter of Death. Springer,
... With the booming of digital devices and enhanced coverage of the internet, online activities are increasingly interwoven into our everyday experiences, including the experience of losing a loved one and mourning the loss [9]. Vanderwerker and Prigerson showed as early as 2004 that more than half of the bereaved used online platforms for support [10] and other studies show how social network platforms have been used by bereaved individuals to maintain continuing bonds with the deceased [11]- [14]. ...
... Bolby's attachment theory [17], Kübler-Ross's five stages of grief [18] and Neimeyer's meaning reconstruction theory [19]). Next, as digital technology is increasingly mediating and influencing how we mourn and grief, we outline several studies in the field of Human Computer Interaction which have shown how such technology could play a role in grief care (such as to help establish continuing bonds [9], [13] or provide social support [20]). However, there have been few studies exploring diagnosing and treating PGD using the state-of-the-art technologies such as machine learning. ...
... These criteria are respectively: (A) the duration criterion (at least 12 months after the loss), (B) significant degree of yearning and preoccupation of the thoughts of the deceased, (C) 8 out of 3 clinically significant cognitive, emotional and behavioral symptoms (avoiding reminders of the loss, disbelief or emotional numbing over the loss, identity crisis or difficulty trusting others), (D) the impairment criterion (experiencing social or occupational dysfunction), and (E) the duration and severity of bereavement exceeds the social, cultural, or religious norms for the individual's culture and context and (F) the symptoms are not better explained by other conditions such as Major Depressive Disorder (MDD) or Posttraumatic Stress Disorder (PTSD) [30]. Due to the recency in which PGD was recognized, researchers and healthcare providers rely primarily on PG-13 and PG-13-R [9], [31]- [33] (see Sekowski Prigerson's comparison of each PGD diagnostic tool in [34]) as the state-of-the-art diagnostic approach. However, it is also important for future studies to provide a more in-depth understanding in regards to the field experiences of accurately diagnosing PGD to facilitate the maturity of treating this mental disorder. ...
Full-text available
Losing a loved one through death is known to be one of the most challenging life events. To help the bereaved and their therapists monitor and better understand the factors that contribute to Prolonged Grief Disorder (PGD), we co-designed and studied a web-based explainable AI screening system named “Grief Inquiries Following Tragedy (GIFT).” We used an initial iteration of the system to collect PGD-related data from 611 participants. Using this data, we developed a model that could be used to screen and explain the different factors contributing to PGD. Our results showed that a Random Forest model using Bereavement risk and outcome features performed best in detecting PGD (AUC=0.772), with features such as a negative intepretation of grief and the ability to integrate stressful life events contributing strongly to the model. Afterwards, five grief experts were asked to provide feedback on a mock-up of the results generated by the GIFT model, and discuss the potential value of the explanatory AI model in real-world PGD care. Overall, the grief experts were generally receptive towards using such a tool in a clinical setting and acknowledged the benefit of offering a personalized result to the users based on the explainable AI model. Our results also showed that, in addition to the explainability of the model, the grief experts also preferred a more “empathetic” and “actionable” AI system, especially, when designing for patient end-users.
... Pennebaker & Beall [4], for instance, found that writing about a traumatic event for 15 minutes a day over four days led to improved physical health six months later. Such expressive writing enables individuals to cognitively process their traumatic experiences [5], elaborate on associated negative emotions [6,7] and thereby habituate to these negative experiences [8]. Furthermore, writing therapies are easy to deploy in unsupervised settings, and may be a good option for the estimated 42% of individuals who primarily turn to the Internet for guidance on mental health issues [9]. ...
... While classic expressive writing exercises used in therapeutic care are generally paper-based and mostly conducted on-site, burgeoning studies indicate that computer-based writing exercises may be equally effective while providing a more cost-effective, accessible and anonymous alternative [21][22][23]. Online writing activities have yielded positive user feedback and promising results in fields such as prolonged grief disorder (PGD) [7], post-traumatic stress disorders (PTSD) [24,25] and depression [26] and other mood disorders [27,28]. Thus, internet-based technologies have been applied in the field of healthcare to promote better self-monitoring [29,30]. ...
Full-text available
Conventional writing therapies are versatile, accessible and easy to facilitate online, but often require participants to self-disclose traumatic experiences. To make expressive writing therapies safer for online, unsupervised environments, we explored the use of text-to-image generation as a means to downregulate negative emotions during a fictional writing exercise. We developed a writing tool, StoryWriter, that uses Generative Adversarial Network models to generate artwork from users’ narratives in real time. These images were intended to positively distract users from their negative emotions throughout the writing task. In this paper, we report the outcomes of two user studies: Study 1 ( N = 388), which experimentally examined the efficacy of this application via negative versus neutral emotion induction and image generation versus no image generation control groups; and Study 2 ( N = 54), which qualitatively examined open-ended feedback. Our results are heterogeneous: both studies suggested that StoryWriter somewhat contributed to improved emotion outcomes for participants with pre-existing negative emotions, but users’ open-ended responses indicated that these outcomes may be adversely modulated by the generated images, which could undermine the therapeutic benefits of the writing task itself.
Introduction It is estimated that 55 million people are living with dementia worldwide in 2021, and the numbers are expected to rise to 78 million in 2030 and 139 million in 2050 (Siriaraya et al., 2022; World Health Organisation, 2022). Dementia is an umbrella term that describes neurodegenerative disorders that impact memory, cognition, language, and behaviour (Beck et al., 1998; Cohen-Mansfield, 2001; Kane, 2001). Along with symptoms of dementia such as forgetfulness, disorientation and communication, People with Dementia (PwD) often lose their sense of autonomy and capacity to make decisions in various or all aspects of their life (Garcia-Palacios et al., 2002; Jones et al., 2015). Currently, there is no cure for dementia. Thus, promoting well-being in PwD or Quality of Life (QoL) is considered a quintessential measure of effective dementia care (Van Nieuwenhuizen and Nijman, 2009). QoL for dementia care is multifaceted, which includes measures related to i. physical comfort, hygiene, and wellbeing, ii. safety, security, and order, iii. maintaining a sense of autonomy, dignity, and privacy, as well as iv. living a meaningful life, individuality, maintaining relationships, and enjoyment (Kane, 2001). However, such measures of QoL can be challenging to achieve due to the complexity of dementia symptoms (i.e. cognitive decline, losing the ability to communicate, behaviour that challenges, etc.) (Hennelly et al., 2021) and families’ burden of caring for PwD against other competing priorities (Sury et al., 2013). In the case of institutionalised care, care settings suffer from understaffing and a low retention rate (Brown Wilson, 2009; Bunn et al., 2020), which leads care settings to focus on delivering everyday care (i.e. physical safety, assistance in eating and bathing) over other psychosocial QoL measures (Hicks et al., 2022). As such, there is an immense need to develop tools, interventions, and solutions to preserve and promote PwD's QoL and overall physical, emotional and mental well-being. In the past few decades, substantial research within the HCI domain has investigated technology-supported healthcare and well-being interventions to cater to an array of cognitive, emotional and mental disorders such as body image and eating disorders (Matsangidou et al., 2020; Wiederhold et al., 2016), depression and anxiety disorders (Falconer et al., 2016; Griffiths et al., 2022; Otkhmezuri et al., 2019; Siriaraya et al., 2021), addiction (Intarasirisawat et al., 2020; Siriaraya et al., 2021, 2018), and prolonged grief disorder (She et al., 2022, 2021). Other HCI research has also investigated the use of technologies to promote positive health and well-being, including interventions for supporting and enhancing physical exercise (Kiriu et al., 2019; Matsangidou et al., 2017b, 2017a), elevating mood (Gaggioli et al., 2019; Lee et al., 2021; Peters et al., 2018), assisting in the pursuit of everyday happiness (Panote Siriaraya et al., 2022; Suzuki et al., 2021), and promoting pro-social behaviour and interaction (Ibrahim and Ang, 2018; Oliveira et al., 2021; Siriaraya et al., 2014, 2013; Slattery et al., 2021). Given the wealth of literature on human-centred healthcare technology, we believe that utilising such technology to support PwD's lived journey through dementia holds great potential and benefits. However, such technologies need to attend to the unique design requirements when designing user-friendly and effective interventions for PwD. For instance, the fluctuation of cognitive impairment is a marked deficit of a dementia diagnosis. As such, PwD experience barriers in using mainstream web platforms due to difficulties in recognising the correct navigational path, have less eye/hand coordination when using input devices (i.e. mouse) and have a lower threshold for information overload (Slatin and Rush, 2003). Such cognitive deficits have also been reported to affect navigation and socialisation in 3D spaces (Siriaraya and Ang, 2019, 2012). Furthermore, PwD face difficulties in maintaining attention and struggle to deactivate irrelevant stimuli (Cohen-Mansfield, 2001), which may affect the efficacy of technology-based interventions. It has also been reported in the literature that PwD are sometimes reluctant to participate in activities, interventions or use new technologies, due to their concerns about how other people view them, especially if they carry out some tasks or use technologies incorrectly (Nolan et al., 2006). Hence, it is a challenge not only to persuade PwD to join an activity but also to let their guard down and be truly engaged. Finally, difficulties in the areas of language and communication is a common symptom in PwD; it can be challenging for PwD to share their thoughts or express their emotions (Banovic et al., 2018). As such, it is imperative that tools, solutions, interventions, and technologies developed are based on sound human-centred principles, and sensitive to the needs of this population in a bid to design more user-friendly, highly engaging, and effective solutions (Tabbaa et al., 2020), which can also help PwD and those around them understand their emotions through means beyond verbal communication (Jiang et al., 2022a, 2022c; Tabbaa et al., 2021; Zeng et al., 2020a, 2020b). In the following sections, we discuss key areas of digital technologies which are relevant to dementia care. We then conclude by summarising the six papers of this special issue. Section snippets Cognitive Assessment, Training & Remeniscence Designing and developing interventions to detect and assess cognitive deficits is one area of research that has received significant interest within the HCI community. Research has shown that older adults with mild cognitive impairment are at higher risk of progressing to more severe cognitive impairment (Petersen et al., 2001) and that early detection of subtle signs of cognitive decline provides a greater opportunity for timely intervention (Dubois et al., 2015). In one study, researchers Promote Positive Well-being Beyond diagnosis and assessment, many studies have focused on designing technology-based interventions to promote positive well-being and mood. One major factor leading to compromised QoL is the significant barriers PwD face in accessing stimulating, interesting and engaging experiences beyond their physical premises due to location, weather, safety concerns or mobility constraints. As such, many studies have examined how technologies can be designed to promote positive well-being. In one Socialisation & Meaningful Conversations The body of research has concluded that the use of technologies to build strong and meaningful connections between PwD and their social circles (i.e. family, friends, caregivers, the community, etc.) and engaging them in social activities can reduce the speed of the cognitive decline and depressive symptoms (Barbosa Neves et al., 2019; Kleinberger et al., 2019; Ramírez et al., 2014). However, family members often struggle to find topics to discuss with PwD because they are unsure if PwD will be Exergames Physical exercise is important for PwD as it improves their physical fitness and contributes to a better QoL (Barnes, 2015). However, many PwD lose interest in themselves and others and lack the motivation to engage in activities (Kitching, 2015). Furthermore, PwD struggle to focus attention during exercise and deactivate irrelevant stimuli (Schutzer, 2004). As such, several research works have designed interventions to motivate physical exercise through gaming technologies or what is known as Accessibility & Independence PwD life, identity and personhood are not defined by their dementia diagnosis. As such, creating a positive narrative around “life with dementia” is essential to help PwD maintain their independence, autonomy, individuality, and, ultimately QoL for as long as possible (Yates et al., 2019). As such, many researchers have investigated ways in which PwD, especially those in their early stages of dementia, can enjoy life more independently. For instance, one study examined the accessibility Summary of the Special Issue It would be impossible to cover such a breadth of application areas of technology in dementia care within the scope of the special issue. We have received a significant number of submissions, and ultimately, we accepted six papers covering two key technology fields which are starting to make an important impact in healthcare generally, and dementia care more specifically: i) machine learning and ii) immersive technology.
The impact of digitalization on the topic of death and dying seems to be accelerated in recent years. This study aimed to explore the online ways people used to overcome grief and used the COVID-19 restrictions as an example. Thirty-two bereaved participants were interviewed and the data were analyzed using the constructive grounded theory method. Three main themes were extracted from the data: 1) an online way to remember; 2) digitalization of social support, and 3) continuing the bonds. Findings highlighted the important and inevitable role of the digital world in the grief process when there is a restriction in holding usual ceremonies.
Conference Paper
Full-text available
The paper introduces a multimodal affective dataset named VREED (VR Eyes: Emotions Dataset) in which emotions were triggered using immersive 360° Video-Based Virtual Environments (360-VEs) delivered via Virtual Reality (VR) headset. Behavioural (eye-tracking) and physiological signals (Electrocardiogram (ECG) and Galvanic Skin Response (GSR)) were captured, together with self-reported responses, from healthy participants (n=34) experiencing 360-VEs (n=12, 1-3 min each) selected through focus groups and a pilot trial. Statistical analysis confirmed the validity of the selected 360-VEs in eliciting the desired emotions. Preliminary machine learning analysis was carried out, demonstrating state-of-the-art performance reported in affective computing literature using non-immersive modalities. VREED is among the first multimodal VR datasets in emotion recognition using behavioral and physiological signals. VREED is made publicly available on Kaggle 1. We hope that this contribution encourages other researchers to utilize VREED further to understand emotional responses in VR and ultimately enhance VR experiences design in applications where emotional elicitation plays a key role, i.e. healthcare, gaming, education, etc.
Full-text available
Social media constitute new social spaces where the topics of death, loss, and mourning are increasingly encountered and negotiated. Users might either engage in mourning practices themselves or be confronted with other users’ mourning during their everyday social media use. The omnipresence of mourning in social media poses challenges to the users and increases the need for norms on how to engage in online mourning practices and how to react toward expressions of grief and mourning. This article systematically reviews 25 internationally published journal articles on norms guiding mourning practices and (non-)reactions toward these practices in social media. Three different types of norms related to different forms of practices are identified in the review. Results show that norms for mourning in social media are in flux and consistently negotiated between users. However, norms for mourning in social media often adhere to traditional norms that are adapted and reconfigured.
Full-text available
This article describes and reflects on the processes of designing two devices, Timecard and Fenestra, that both aim to propose new ideas for creating technologies that support rituals of honoring deceased loved ones. The discussion provides insight into how their respective designs were crafted to provide a range of interactions and to interweave with domestic practices, artifacts, and spaces; the article also describes the projects’ similar strategies to supporting relationships with the deceased. Reflections then are offered about the design of future technologies aimed at supporting the processes both of adapting to the loss of loved ones and of honoring their continued evolving place in the lives of the living after they are gone.
A basic motivation for social and cultural life is the problem of death. By analysing the experiences of dying and bereaved people, as well as institutional responses to death, Clive Seale shows its importance for understanding the place of embodiment in social life. He draws on a comprehensive review of sociological, anthropological and historical studies, including his own research, to demonstrate the great variability that exists in human social constructions for managing mortality. Far from living in a 'death denying' society, dying and bereaved people in contemporary culture are often able to assert membership of an imagined community, through the narrative reconstruction of personal biography, drawing on a variety of cultural scripts emanating from medicine, psychology, the media and other sources. These insights are used to argue that the maintenance of the human social bond in the face of death is a continual resurrective practice, permeating everyday life.
This special issue entitled “Futures of Digital Death: Mobilities of Loss and Commemoration” explores the topic of digital death and how technologies are reconfigured by and reconfiguring social relationships with the deceased and dying loved ones as well as the larger ecosystem supporting such relationships. This Introduction article starts with an overview of the past research on digital death intended to provide a relevant context for the five papers included in this issue. Then, we reflect on how the current papers, or the present research, build on the past and can be used to address existing gaps and to inform future new research directions in order to move the field forward.
Introduction: Importance of Sibling Relationships. A Life Span Perspective for Sibling Research. Methodological Approaches and Issues in Studying Siblings. Siblings in Childhood Adolescence. Siblings in Adulthood and Old Age. Siblings in Crosscultural Perspective. Understanding Sibling Relationships: A Hermeneutic Approach. Sibling Helping Relationships. Siblings as Caregivers of Elderly Parents. Siblings with Chronic Illnesses and Disabilities. Sibling Conflict, Aggression, Violence, and Abuse. Sibling Sexual Experiences: Normal Exploratory Behavior, Nonabusive Incest, and Abusive Incest. Loss of Siblings through Death. Siblings and Psychotherapy. Epilog. Index.
Background: Prolonged grief disorder (PGD) is a bereavement-specific syndrome expected to be included in the forthcoming ICD-11. Defining the prevalence of PGD will have important nosological, clinical, and therapeutic implications. The present systematic review and meta-analysis aimed to estimate the prevalence rate of PGD in the adult bereaved population, identify possible moderators, and explore methodological quality of studies in this area. Methods: A systematic literature search was conducted in PubMed, PsycINFO, Embase, Web of Science, and CINAHL. Studies with non-psychiatric, adult populations exposed to non-violent bereavement were included and subjected to meta-analytic evaluation. Results: Fourteen eligible studies were identified. Meta-analysis revealed a pooled prevalence of PGD of 9.8% (95% CI 6.8-14.0). Moderation analyses showed higher mean age to be associated with higher prevalence of PGD. Study quality was characterized by low risk of internal validity bias but high risk of external validity bias. Limitations: The available studies are methodologically heterogeneous. Among the limitations are that only half the studies used registry-based probability sampling methods (50.0%) and few studies analyzed non-responders (14.3%). Conclusions: This first systematic review and meta-analysis of the prevalence of PGD suggests that one out of ten bereaved adults is at risk for PGD. To allocate economic and professional resources most effectively, this result underscores the importance of identifying and offer treatment to those bereaved individuals in greatest need. Due to heterogeneity and limited representativeness, the findings should be interpreted cautiously and additional high-quality epidemiological research using population-based designs is needed.
This article investigates the online information practices of persons grieving and mourning via Facebook. It examines how, or whether, these practices and Facebook’s terms of use policies have implications for the bereaved and/or the memory of the deceased. To explore these questions, we compared traditional publicly recorded asynchronous modes of grieving (i.e., obituaries) with Facebook’s asynchronous features (i.e., pages, photos, messages, profiles, comments). Additionally, by applying observational techniques to Facebook memorial pages and Facebook profiles, conducting a survey, and interviewing respondents as a follow-up to the survey, we examined the benefits of and issues surrounding online information sharing via Facebook when coping with the loss of another. We found that the immediacy of publishing comments, messages, wall posts, and photos provides Facebook mourners with a quick outlet for their emotions and a means of timely group support; however, these actions directly affect the online curation of the deceased’s self and memory and also create an environment of competition among mourners. The aforementioned benefits and complications of using Facebook during bereavement are shaped by the policies outlined by the social media platform.