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.