Workshop Themes
We are organizing both the call for participation and the
workshop activities around three themes related to HCI
research at end of life and beyond. These themes
both clarify our goals and support participants –
experts and non-experts alike – in their preparations
for the workshop discussions and participation in design
activities. Note, the workshop activities will necessarily
assume high levels of pre-event engagement.
Theme 1. Conceptual Resources for Design.
Theories of bereavement are at the same time one of
the most useful, and also one the least familiar,
resources for HCI researchers new to this space. For
this reason, and without excluding alternative or
complementary positions, we are being explicit about the
theories and frameworks of loss and bereavement that
we are asking participants to engage with: (i) stages
& phases; (ii) dual-process theory; and (iii) continuing
bonds. We will be providing
attendees (post-acceptance)
with a set of curated resources that help them to
familiarize themselves with these theories.
(i) Stages & Phases: In the West since Freud [3],
dominant grieving and mourning practices have been
conceived as the processes whereby the bereaved
person adjusts to the reality of their loss, enabling
them to disengage from the deceased and reinvest in
new relationships. Numerous theories that have
followed have broadly been based on the notion that
the process of bereavement follows a set of stages
whereby the bereaved moves between phases as feels
right for them personally.
Kübler-Ross [7] 5 stages of
grief (denial, anger, bargaining, depression,
acceptance) describes how people cope with illness and
was only later extended to grieving. Bowlby and Parkes
[2] applied Bowlby’s attachment theory to present four
main stages in the grief process. While Kübler-Ross’s
work was largely based on clinical observations, Bowlby
and Parkes applied attachment theory in characterising
grieving not as a state (stages) but as a process
(phases) that the bereaved needed to work through.
More pragmatic approaches, such as Worden’s [19],
frames mourning in terms of active ‘grief work’ to be
undertaken to move beyond the passive phases of
grief: (i) to accept the reality of loss; (ii) to work
through and experience the pain of grief; (iii) to adjust
to an environment without the deceased person; and
(iv) to withdraw emotionally from or relocate the
deceased and move on with life.
(ii) The Dual-Process Model: Although stages & phases
approaches are the most widely known and accepted
theories and frameworks of bereavement, on which
most contemporary therapies and self-help guidance is
based, they are not universally accepted. Indeed,
Stroebe and Schut [16] critiqued the stages & phases
view for its linear characterisation of grieving,
prescriptive nature, narrowly western perspective,
tendency to oversimplify the complex phenomena of
loss particularly in relation to individual differences, and
lack of empirical validation. Instead, Stroebe & Schut
draw on Cognitive Stress Theory in presenting their
“Dual-Process Theory”, an alternative view of how
people come to terms with the bereavement of a
person close to them. In their alternative model of
“coping” they identify two classes of ‘stressors’, loss
and restoration. In the loss-oriented process the
bereaved engages with the recognition and acceptance of the loss itself, associated changes personal, social
and economic circumstances, and their own identity. In
the restoration process, the bereaved focuses on new
aspects of their post-loss reality, that is, issues that
need to be addressed and how to address them.
Stroebe & Schut propose a “dynamic, regulatory coping
process of oscillation, whereby the grieving individual
at times confronts, at other times avoids, the different
tasks of grieving” [16 p. 197].
(iii) Continuing Bonds. An alternative approach that
focuses on continued connections with deceased
persons, rather than detachment, have become
prevalent in the West over the last two decades and
have brought a return to pre-modernist Western
practices. Klass, Silverman and Nickman’s [5, 6] notion
of continuing bonds articulates a concept of grief that
acknowledges the value of a continued sense of
connection between the bereaved and the deceased.
Rather than seeing grief as a process working towards
‘letting go’ they advocate processes whereby people
find ways to sustain the presence of the deceased in
their lives in order to find healthy ways to live with
bereavement. There is a fundamental recognition firstly
that people are relational selves wherein sense of self is
supported by others and secondly that this does not
end when a loved one dies. There are social and
cultural precedents for such ongoing relationships with
the dead within many non-western cultures, including
Maori practices and the Marae [11] and the Sora of
Eastern India [17]. As such a continued connection to
the dead is nothing new but is something that in the
West we lost in the 20th Century “marginalized by the
discourses and practices of modernity” [4 p.127].
Theme 2. Design Methods for End of Life Research.
Enabling people to engage in conversations about
emotionally loaded content around death, dying and
bereavement is challenging for researchers. There is
the opportunity to focus on ways to conduct research in
these sensitive contexts which are underrepresented in
HCI research. Design will be explored through the
introduction of readily accessible methods such as
Blueprints and Life Cafe, which will be introduced as
starting points to discuss how to facilitate participatory
engagements for this challenging context. Design can
offer sensitive methods that are responsible to the
context and result in appropriate forms of knowledge
for HCI. In linking to technology, we will consider the
appropriation of digital media to support people by
offering meaningful interactions in the contexts of
bereavement and anticipation of death. Topics of
interest include (but are not limited to): designing with
metadata, designing with digital services/platforms,
and augmenting digital and physical objects.
Understanding how to design platforms and tools for
meaningful experiences in interacting with digital
objects and services for people who are bereaved will
be a major element of this theme in the workshop.
Theme 3. Ethical Issues with End of Life Research.
Ethics are a system of moral principles and branch of
knowledge enquiry defining what is good for individuals
and society. Whilst academic disciplines operate within
publicly defined ethical parameters, both ethical codes
and procedures can be protectionist, stifle creativity
and focus more on process than people. This has led to
calls for a more situated ethics and an acceptance that
this is a good way forward. The last five years has seen
a growing interest in ethics from within the HCI
community as evidenced by plethora of papers and
growing number of workshops [1, 10, 12]. As
researchers increasingly work in interdisciplinary teams
within the context of health and wellbeing, they are
being required to navigate unfamiliar ethical contexts
and research dilemmas. Within the workshop we will
weave ethics discussions pertinent to interdisciplinary
working as well as the contexts of approaching end of
life and bereavement into the design activities using a
range of resources to support this.
