Hi. Hello. My Name is Ruben Albers and I am PhD student at the university of Siegen
and I present our paper: Dying, Death and the Afterlife in HCI
That’s a scoping review that i have done with my colleagues
Shadan Sadeghian, Matthias Laschke, and Marc Hassenzahl
Also from the University of Siegen
If you are not familiar with the topic it might sound strange
But there is already some history in HCI
So when the Internet became popular
people started to think how it could be used to support people who are preparing for death
or people who are looking for social support during times of grief
later on people also started to realize that eventually the users of their systems will die.
In this context the term “thanatosensitivity” got coined to describe systems that acknowledge the experience of death
From that point onwards we started to think about what digital death means and how death is represented in the digital sphere.
Overall we can say that death in HCI emerged as a phenomenon
In general purpose technologies, but is never really designed for.
We wondered what it would look like if we design for a good death.
So eventually we want to make death better through design or at least more bearable.
In this context we looked at the needs of dying and bereaved people.
Of course, also individual and social meanings of death might change how these needs are fulfilled
But in general, it gives a good way to understand good death.
Based on this background we look at the existing research in HCI
Through the lens of a good death
I’ll describe this lens a bit more
Then elaborate the scope of the literature review
And describe the results and discussion
So a good death is best understood as different areas of task work
that dying people could do in order to prepare for their death and feel good at the end of life.
this covers biological, psychological, social, and spiritual wellness
and means that
people shopuld not die in pain
people should feel autonomous at the end of life
or sustain important relationships
and even achieve some kind of spiritual wholeness or hope
In general we can use these tasks of dying as a framework
to understand the neeeds and values of dying people
and what might lead to a better death
At the same time we can look at the tasks of mourning
to understand what healthy grief should look like
In general it describes a grief journey as
accepting loss, working through the pain of grief
adjusting to the changed world and moving on with an enduring connection to the deceased.
The whole idea is that loss is easier to bear with
Throughout the grief journey
With this understanding of good death in mind we looked at
107 that deal with death in HCI
We found them in the ACM Digital Library
Using a title scan, a subsequent keyword search and an additional citation search
Which lead to the 107 reports
Which we again scanned for conceptual and theortical contributions
with a particular focus on the practices
that are enabled through technology
These practices we grouped into three themes
that are also relevant for dying and bereaved people alike.
so the first theme that we found was digital remains
which describes the things that people leave behind
especially digital posessions that might also be inherited by the bereaved.
then we have the theme of remembrance that describes how
people look back at their own life
Or how the bereaved look back at their time with the deceased
Last but not least we have the theme of coping which
describes how people face death and how people cope with grief
So what we need to remember for now is that there are
Three distinct themes that address challenges of death
And we go into a bit more detail now.
So the first theme of digital remains describes what dying people can do to curate or prepare their things that they leave behind.
The bereaved people will receive this kind of things as stored files, heirlooms, griefbots, or stewardship over a social media account.
That enables them to either store those things, feel close to the deceased or even interact with the deceased through them.
All in all, the research on digital remains concerns itself largely with
handling the digital death
So the question of what happens to digital things after we die.
Secondly, we have the theme of rembrance that focuses on
How dying people look back at their life through digital memories
Or interactive systems that encourage reflection on one’s life story.
Then we have the bereaved who can use digital mementos to
commemorate or tell stories about the deceased
honor them, or even integrate them into their life, through online memorials, family altars, or digital mementos
research on remembrance looks at life stories, grief, and reminiscence
Thirdly, we have the theme of coping that describes
How dying people can sustain richness in life,
make sense of their death
or even arrange end-of-life decisions
We also see that the bereaved can use technology to engage in rituals of letting go.
make sense of their grief or find social support in online networks.
So mainly, a therapeutical use.
In that sense, the technology for coping offers resources
to facilitate acceptance and closure.
For the dying people, we see that technology can help to affirm identity, construct narrative and face death.
However, the current focus is on what happens to digital estate after death.
For example, what happens to my social media account after I die.
In this context, the focus is on posthumous presence, reputation, or self-presentation.
So how do people want to look after death or be present in the online sphere.
We have seen some diverging paths that are less researched
Like life reviews, but also facilitating autonomy and richness at the end of life.
In general, we can say: Aside from legacy...
We know little about meaning and hope at the end of life.
On the side of the bereaved we know that it is important for them to
reconstruct stories about the deceased, integrate their loss and move on.
The current focus is on online opportunities for social support and commemoration
And also the online presence of the dead has been explored in the context of Continuing Bonds Theory.
That says that there is a continued but transformed interaction with the deceased after death.
There are some diverging paths that describe for example
how the deceased can be integrated into the everyday life of mourners
or how family shrines can enable some kind of ritualized remembrance.
However, most technologies in this context,
are rather passive and past-oriented
and neglect the evolving grief journey.
So there is an opportunity to modulate better
the changes that occur throughout grief.
All in all, more than half the research in HCI deals with legacy-making, memorials, or networked grief.
Of course hopes to be remembered are important
and could benefit sociopsychological wellness
but there are also other preparations that matter.
Such as attaining integrity or wholeness at the end of life.
Caring for others with whom we have shared a life story
and the preferences that we have for our own death as well as spiritual beliefs.
In that sense, digital legacies might be too restrictive
to address a good death.
Following up on this, future thanato-technologies could take more holistic approaches to preparing for a good death.
For example, we could look at how technologies enable a well-managed death
through shared meaning-making, joint preparations
that means that the bereaved people could be involved in the dying process, but also vice versa
So dying people could curate certain actions or interventions for the grieving process
But this needs to be carefully negotiated.
Another thread could be spiritual meaning-making that further explores
how we make sense of meaning and closure in the context of death.
And how maybe death acceptance could be facilitated through meaning-making and technology
Overall, we have seen that designing for a good death opens up
new avenues for thanato-technology.
If you want to read more, please check out the paper in the ACM Digital Library
Thank you very much for your attention.