Designing for the Experience of Bereavement Gabriele Barzilai
Abstract
Department of Industrial Design
This paper explores empathic design within the field of User Experience Design through a series of empathic research strategies. The authors have employed these research tools to identify the true needs of individuals who experienced mourning and gain important insights, which could set up the guidelines in designing for such delicate target groups. The research was implemented through two different approaches; empathic modelling and semi-structured interviews in the form of guided discussions. Empathic modelling provided a first person experience of facing the mourning process, while interviews, through open-ended questions, provided implicit insights from a third person perspective. Upon the data analysis of the qualitative empirical data from the interviews, certain patterns emerged. The gathered insights formulated a solid foundation for a design concept grounded in authentic human needs followed by an evaluation by users and experts in the field.
Eindhoven University of Technology Eindhoven, The Netherlands g.barzilai@student.tue.nl Martijn van Dongen Department of Industrial Design Eindhoven University of Technology a.m.v.dongen@student.tue.nl Eleni Economidou Department of Industrial Design Eindhoven University of Technology e.economidou@student.tue.nl
Author Keywords Empathy, user experience, user research, research strategies, mourning, bereavement, authentic human needs.
Introduction As the field of HCI extended its original scope, encompassing a wider range of disciplines other than computer science and human factors engineering [1], User Experience Design (UXD) has gained a greater role, addressing more suitably the complexity and the richness of the overall human experience. The emergent area of User Experience Design (UXD) employs an approach which results particularly suitable for dealing with challenging and sensitive issues, such as facing the death of a beloved one or escaping from war, the complexity of which is given by the concurrence of many aspects (social, economic, cultural, psychological). The present research aims to rise to the challenge of designing for bereavement through enquiring into how individuals experience such a tragic event. Understanding in depth the set of needs people experiencing bereavement have, was the starting point for setting up the research about such potential users of a potential product/service/system. It is worth to mention that, although some literature about how to perform research on user experience [2,3,4,5] was employed to arrange the early stages of the research, the priority of the investigation was to understand people who mourn from a human point of view, regardless the implications in terms of a design project and without stressing the role of users. This paper aims to gather findings upon the investigation the human needs expressed by people who are currently experiencing (or who have previously experienced) bereavement, carried on by applying the theoretical knowledge and the set of enquiry techniques employed in the User Experience Design field. Therefore, this paper portrays a brief review of the relevant literature; a description of the methodology used, as well as the conceptual design phase which
derived from the analysis and interpretation of the gathered qualitative data; the evaluation of the elaborated concept and, finally, a discussion on the findings.
The Experience of Loss Far from being agreed upon, the definitions of grief and mourning are still debated within the field of Psychology [6], where a variety of different interpretations of such phenomena feeds a controversy on how the issue of loss of a loved one should be addressed [7]. The meeting point among the different theories and approaches is the notion of loss as a natural and universal phenomenon to which individuals react grieving and mourning. According to [8], a distinction can be drawn among the terms bereavement, grief and mourning, with respect to the notion of loss. The experience after the loss of a loved one is called bereavement, while the emotional and psychological reaction to such a loss is grief, and the expression of grief and bereavement in terms of cultural representation is the act of mourning. The scientific debate starts from the acknowledgement that bereavement is experienced differently from individual to individual. It can be hard, if not impossible, for someone to overcome the related grief. Although a minority, people struggling with reconciliation, a term used to describe the capability of a bereaved individual to start a new life without the beloved who died [9], are the main object of study that feeds the debate giving rise to different interpretative currents. One of these currents [6,10] sees the process of grieving, including painful loss reminders, as essential in order to get over the psychological distress. The avoidance of the thoughts and memories related to
the traumatic event is considered as a defensive reaction of bereaved people against the grief, which prevent them from overcoming it. Such an interpretation of the problem clearly supports the idea that grief is a normal process following the experience of loss, where people who are not able to go through such a process are facing an atypical form of grief called complicated grief or prolonged grief disorder. This not only draws the boundaries of normality, marking the divide between what is a correct and healthy way of dealing with bereavement and what is not, but also introduces phases through which individuals have to go to achieve the reconciliation [9,11]. Although concerning specific and tasks-like phases, such a theory is consistent with those more abstract defining the stages of grief (e.g. [12,13]). Among the most popular, the misconceived and much debated [14] theory of the five stages of grief by Kübler Ross [12]. Theorised by the Swiss psychiatrist in 1969, the stages are based on her long experience with terminal ill patients and consist in five abstract psychological conditions (denial, anger, bargaining, depression, acceptance) patients have to experience in order to cope with the grief caused by knowing that they will die. This theory, though erroneously extended to all kinds of grief, shares with the concept of reconciliation the idea that grieving in a certain way is therapeutic and necessary. An opposite direction, building upon an empirical study [15], is recently taking hold, stating the non-existence of the stages of grief in the majority of bereaved people and questioning the very foundation of counselling therapies based on the theory of the stages of grief. This stance builds upon the verification that only one tenth of the bereaved people observed show a
prolonged grief and almost two third of them fall into the pattern of resilience. In other words, Bonanno’s study argues that there is no reason to focus on grieving as a stages-process when data shows that most of the people are resilient without going through stages. Moreover, Bonanno implicitly claims the therapies based on the stages theories being even harmful as they slow down the resilience by supporting a grieving process. On the same wavelength, though from a totally different perspective, is the constructivist approach to grief therapy [16]. Researchers and professionals embracing this method share with Bonanno’s point of view the conviction that bereavement and related grief are essentially personal, varying the intimate experience from person to person. Therefore, assuming universal psychological stages or standard tasks to perform in order to overcome the grief are an oversimplification which does not correspond to the real phenomenon people experience. However, being rooted in the psychodynamic school, constructivist approach pursuits narrative strategies for grief counselling, aiming at developing the capability of bereaved people to reconstruct the meaning of their traumatic experience to adapt to the loss. Grief, here, is still seen as an essential part of the human experience of loss people need to go through to overcome it. What distinguishes this approach from the others is the acknowledgement of the complexity which characterises the human process of adaptation to loss, seeing “grieving as a process of meaning reconstruction” [16].
Lastly, several studies in the field of neuroscience address the problem of complicated grief, focusing on the relationship between the dynamics of thoughts and the functioning of the brain. A recent study [17] investigated what the researchers called a cognitive paradox, namely a memory impairment observed in people experiencing a complicated grief, only sparing the memories related to the lost loved one. As the same part of the brain manages both autobiographical memories and visions of future, the researchers are trying to discover whether such a deficit in memory also affects the capability of projecting oneself into the future, resulting in a getting stuck in the grief process. The results of a test performed on people with complicated grief [16] show that the defects in memory and imagination only appears when the events are not related to the deceased, whether they are recalls of the past or future projections. These individuals showed a normal cognitive activity when recalling past events or imagining a future scenario with the lost loved person. Although inquiries like this try to shed light on the phenomenon of prolonged grief, they imply a mechanistic interpretation of the behaviour, identifying the dynamics of neural connections of the brain as its primary trigger. A more broad-minded approach [18], while recognising the biological nature at the base of cognitive and behavioural processes, attribute grief and the process of mourning to a higher level of the brain activity namely the consciousness. In this view, mourning is seen as a symbolic action the brain performs through the consciousness in order to “repair� itself, extended to any type of loss, being at the base of the healing process of mind.
Albeit, often conflicting to each other and far from being conclusive, these studies on the human experience of loss are priceless for the understanding of the phenomenon of mourning and promising with respect to the identification of valuable strategies to cope with grief.
Designing for the Experience of Bereavement Definition of the Problem An adage recites that the secret of the solution to a problem lies in a well-defined question. However, a well-defined question requires a thorough understanding of the phenomenon the problem at hand relates to. Because mourning results hard to define for the scientific community itself, establishing a design perspective about such a phenomenon requires the effort to deal with uncertainty, while taking a stand concerning the different interpretations. In this regard, employing a UXD approach thus gathering qualitative data in order to understand in depth the experience of the loss of a loved one, helps in reducing the level of uncertainty and works as a complementary source of knowledge about the problem. Therefore, the present research embraces a particular point of view on the experience of mourning either referring to the literature and being informed by the qualitative data analysis gathered in the interviews (see under Interviews section). It is recognised at large that grief and mourning are subjectively experienced and there is not a universal model which can be applied indiscriminately either for the understanding of the problem and the coping process. Nevertheless, a grieving process seems to be an omnipresent component triggered by the experience
of bereavement, whether it is more or less intense. The act of mourning is the individual way of dealing with such a grieving process, both in the private and social life. Therefore, helping bereaved people to deal with their grieving process in a way that most suits their specific needs, possibly fostering resilience, is a problem which can be addressed from a design perspective. Often mourning, meant as the expression of the grieving process, is performed by means of artefacts or procedures the design of which does not suit the individual needs of the person. Gathering qualitative data allows designing for the universal phenomenon of loss, taking into account the subjective experience of bereavement and grief. In other words, embracing such an interpretation, the design aims at supporting the bereaved person in performing his/her mourning process in a way that helps to cope with his/her grief. In this respect, design is not limited to a specific case of grief (e.g. complicated grief), being inspired by the research performed on individuals and their specific needs. Because design is meant to be a support to the problem rather than a solution itself, it is believed to be helpful in most of the cases of mourning. Design (research) Challenge The aim of this investigation is summarised by the following question: how people experience mourning and what design can do to support such a process, fostering a resilience? In terms of research, this means employing the UXD methodology in order to grasp the emotional experience of bereaved people and understand what they need by analysing and interpreting the qualitative data gathered. From a design point of view, the challenge is to synthesise the knowledge acquired
either from the inquiry into the bereaved people’s experience and the relevant literature on the case, and being inspired by it to develop a (design) concept. An evaluation of the concept which actively involves the people interviewed is part of the research/design process and aims at improving the design proposal so that it better reflects the potential user’s needs.
Research & Design Methods The research method used in this research is based on the User Experience Design approach [3]. The team followed two empathic design research strategies in order to identify with the allocated target group; in this case, people who have experienced mourning. When it comes to designers, recognising and experiencing the user’s needs is essential, especially if the target audience is notably different from the designers themselves [11]. Upon encounter of someone else’s hardships - in this paper, a person who has lost a loved one - the designer is forced to re-evaluate his personal values and beliefs. This self-reflecting process supports the designer in grasping a better image of the user’s emotional and mental state, avoiding any assumptions, while reducing the projection of his personal understanding onto a proposed design. Greater empathy can be achieved through discussion, in-context observation or by performing an ethnographic study [7]. Frequently, these methods reveal a much more elaborate overview of the user’s context and needs even through implicit actions such as body language, choice of words and voice intonation; expressing needs that the users are not even aware of. Spending more time with a specific target group increases empathy and leads to better, more adequate and satisfactory products.
Figure 1: A screenshot from the Empathy Game video.
Process The research at hand is exploratory; there was no initial hypothesis set by the authors concerning the design needs of people who experience mourning or their personal position on this matter. Alan Cooper’s About Face 2.0 was, amongst other readings, a key element of the qualitative research preparation [7] since it provided with a clear framework for the ethnographic interviews. In the first part of this research, an empathic modelling of activities - which replicated the feeling of grief - was introduced under the term ‘empathy game’; setting up the foundation for empathising with the specific user group. In the second part of the research, the authors conducted six semi-structured interviews of one hour each with people in bereavement, in the form of oneto-one guided extensive discussions. The research team structured the outlines for the interviews in advance; hence, even though most of the questions asked were of open-ended nature, storytelling was encouraged.
usage of an ‘observer’ who ensures that the protocol is followed through. Game Protocol The focus of the protocol was directed to one of the stages of mourning that is closely linked to depression [13]. The team tried to replicate the feeling of being in deep depression by conveying the figurative expression of feeling "weighed down" into a literal one. Each team member had to carry a heavy load on both legs and back and walk around while minimising all social interaction with the rest of the world. Through the use of a pair of noise-cancelling headphones, the experience of living in a small personal bubble was emulated, since only nearby sounds reached the ‘actor’s’ ears. By wearing the headphones in social environments, any sort of interaction was almost automatically avoided. The task for the actor was to walk through the city centre of Eindhoven (The Netherlands) have a cup of coffee in a coffee shop and return to the starting point. The observer had to follow the actor and keep him under close surveillance to make sure that the protocol was followed through precisely during the scenario.
Empathy Game Through the setting of an ‘empathy game’- broadly known amongst design researchers as empathic modelling [11][12] - the research team attempted to maintain a better understanding of the mentality of individuals who had encountered mourning. While this type of ‘game’ is not yet validated under this terminology in either research or literature, it can be seen as a roleplay, the difference being in the usage of the protocol to which the ‘actor’ has to act in accordance with. This protocol element explains the usage of the word ‘game’ in the term, together with the
Video material of the empathy game can be found here: HTTPS://WWW.YOUTUBE.COM/WATCH?V=YOXDXAJA4CM
Evaluation on the Empathy Game The added weight around the ankles was physically straining and demanded an adjustment period to get used to. This fact became evident when the weights were removed at the end of the ‘empathy game’. While the backpack the actors had to carry was quite heavy,
it didn’t directly impact their movement; besides, the actors were mostly used to carrying weight on their backs. With each step, the actors had to lift the weight along with their feet; this limitation directly impacted the movement as the natural movement of walking took much more effort than usual. When one walks through the city centre of Eindhoven or any other busy urban area, he or she is constantly being overstimulated with sounds coming from the both the built environment and other individuals. However, the noise-cancelling headphones filtered out these sounds out providing with the sense that one was abstracted from the setting, partly isolated from his or her surroundings. Insights and Evaluation on the empathy game Following the empathy games, all team members described the experience as isolating due to the noisecancelling feature of the headphones which set a barrier between the person using them and his or her surroundings. While the members only experienced this empathy game for a relatively short amount of time (less than half an hour), they are able to envision this experience in becoming quite disheartening after a prolonged period. The weights on the back and ankles of the players added extra load to this experience, as it made the experience strenuous to bear through. It was noted that the experience of this filter which minimises the experience of a person with the outer world is quite unpleasant. While some sounds can be disturbing in daily life, they do enrich experiences. Subtracting sound as a sensory input eradicates simple experiences like walking through a city centre and alters these moments into less enjoyable ones.
The awareness of participating in such a game was prominent during every moment of the role-play. This factor prevented the actors from getting a real feel of this particular activity. One could argue that a more drastic protocol could push this awareness into one’s subconscious, where it would not influence the overall experience.
Interviews Goal and Procedure The conducted interviews focused on obtaining fundamental knowledge on the mourning process from the interviewees’ perspective; getting to know the way their emotions, reactions or general behaviour altered in their process of grief, and whether and when they had experienced any progress in their period of mourning. The design team decided to handle the interviews in a delicate manner by structuring interviews in such a way that the participants would initially answer questions or discuss their present state and gradually move on to their former condition. One of the initial questions to start a conversation was: ‘Can you describe how you are dealing with it (being in mourning) at the moment?’. The question is deliberately very open, forcing the interviewees to decide for themselves on what they wanted to talk about. The interviewers would, then, gently guide the conversation to find out more about the changes in the life of the interviewee. Questions as; whether the individual went through the different stadia of grief, if the person had created new rituals or habits as a result of the mourning process, or if he or she discovered a certain passion that helped them through this difficult period.
Figure 2: An overview of the finalized affinity diagram, a digitized version can be found in appendix C.
During the interviews, different kinds of transcription were employed by each team member, feeding an affinity diagram merging all the discussed topics. Affinity diagramming assisted in clustering patterns to gain an overview of the concentrated insights and to draw conclusions from the conversations.
The insights were classified into the following themes: Memory Triggers, Time and its importance, Motivation, Preservation of memories, Values and Mind-set, Control, Culture, Rituals related to commemoration, Positivity, Shock, Coping with the loss, Conversations, Realisation of the new situation.
Interviews within Context The six selected interviewees were either acquainted or related to the researchers allowing for high levels of familiarity, ease and confidence. According to Cooper et al., friends and relatives can take part in the interviews since it is more convenient to observe them in their own environment [7]. Interviews were conducted in context, the homes of the interviewees, a fact that enabled them to pinpoint at examples within their surroundings during the said semi-structured interviews.
The most recurrent themes were ‘conversations’ and ‘time’. An observation which aligns with the writers’ personal reflections from the conversations. The majority of the interviewees confessed that discussing their loss and the time it took to get into terms with the new situation were two of the most important aspects that helped them during the mourning process.
Due to the aforementioned relationships with the interviewees, trust on the matter of talking about the mourning process was effortlessly established. Conducting the interview in the interviewees in their home environment was considered as being favourable towards building constructive conversations. However, this was not always possible; three out of the six interviews were executed via video call software. Analysis and Insights from the Interviews Initially, the insights were recorded on post-it notes in the form of quotes, observations and other conclusions from the interviews. When all the findings were collected, the research team clustered them into the identified emergent patterns.
Dialogue seems to have multiple benefits for the individuals who are in bereavement; it serves as an outlet for their emotions and thoughts, providing relief and emotional pain alleviation. It also serves in preserving memories of the deceased. Some of the interviewees expressed the fear that people around them will forget their loss (‘’[...]I am afraid of forgetting him, I have remorse that I forgot him[...]’’); while others attempted having conversations about their loss with friends and other family members to actively counteract this. Aside of preserving one’s memory of the deceased, discussions remind others of the one that passed away, maintaining alive the memory of him/her. While many of the interviewees indicated that time helped in the healing process after the loss, contrariwise, it would also fade their memories. One of the interviewees stated that: ‘’[...] my conscious and my subconscious were in a conflict. The conscious self is trying to forget
what the subconscious is constantly trying to remember […]‘’. Some of the interviewees told that they went through different stages of grief. During one of the interviews, the interviewee reflected on the first year after the loss as living in a dazed state; acting on autopilot, while the second year was filled with anger. The individual was aware of these changes but was unable to move into a new phase voluntarily. Figure 3: A cropped part of the flow chart. The full version can be found in appendix A.
Figure 4: A top down view on the brain storm sketching session.
For most of the interviewees, their loss initiated a required adjustment in their lifestyle. One picked up new rituals in the form of a new sport, while another is now searching for a new buddy to do activities prior done with their loved one. Overall, their outlook on life changed in the way that they valued family relations much more than ever before. One of the interviewees referred to the period of mourning as a time of reinventing oneself, while others stated that they were actively seeking purpose in life, in their words: ‘’[...]I just learned to cherish life. After this mourning, the grief you realise that life is a race. A race to get to do everything you want to do in life; to live life with much more intensity than before. To not spare moments you have to live with your children, with your family, with yourself [...]’’, ‘’[...]Our life should have a meaning. The things we do should matter to someone, to leave a mark an impact on either society or members of your family[...]’’.
research team performed a thorough analysis of all the gathered insights in the form of an affinity diagram (see appendix B). The diagram was, then, broken down into main recurrent themes and their in-between relations and acted as an input for a theme flowchart (see appendix C). Identification of Main Themes for the Concept The research team identified and selected the most prominent central topic out of the concept along with its relations to the other themes and translated it into the following design statements: • •
• •
Visualisation of time and through the mourning phase; acting as a reflection tool. A conversation starter about the griever and his current state as well as the and the late loved one. A way of developing new customised rituals to facilitate the mourning process. Accommodate the need for acknowledgement of prolonged grief (> one year after the loss).
Design Process
Concept Ideation and Selection The team went on performing a brainstorming session to facilitate concept ideation. The generated ideas from the session (see figure 4) derived from the aforementioned statements. In this process, the most relevant ideas were highlighted. In the following design phase, these ideas were combined into one central concept which was once again reviewed through the above statements.
Interviews’ Analysis The key elements and insights from the empathic research were mapped out. Following data collection, as recorded in the previous section of this paper, the
Validation through Co-Constructing Stories The final concept was evaluated through a feedback session with three out of six of the interviewees (see in
the following section) in the form of co-constructing stories. The co-constructive stories consisted of another set of discussions with the target group and was based on the PhD thesis work of Derya Ozcelik: “Involving Users in the Early Phases of the Design Process: How to Build Designer-User Dialogue” [19]. The coconstructing stories (around 45 minutes each) are mainly employed to validate the concept with users’ one-to-one feedback sessions and are divided into two segments; the sensitising story and the visionary story. The Sensitising story (see appendix G) is formed by a storyboard of an open-ended story which sets the stage for dialogue, introducing a situation similar to the one of the user and is meant to make the user empathise with the story’s main character and the context. The Visionary story (see appendix H) completes the sensitising story and introduces the concept in context to assist the user in understanding the design.
Design Description The resulting concept is a combination of a wearable device that the users carry in their daily life and a companion device that remains in their home. These two devices are wirelessly connected to each other; the wearable sends information to the home station. The wearable is intended to create new rituals for the user in the process of mourning. When the user thinks back at the memories of the lost loved one, the user can interact with the wearable in a fidgeting manner. The way the user interacts with the wearable is portrayed by both the wearable and the home station, though in a different way. The wearable displays a 2D visualisation of the user’s emotional state by
associating specific shapes and colours with specific ways of interacting with it. The interaction is direct and the visualisation changes accordingly. Conversely, the home station receives the signal from the wearable, being the interaction of indirect form and produces a 3D visualisation of the user’s emotions. The home station uses modern 3D printing techniques to build a physical representation of the emotions which are collected by the wearable over time (due to the complex nature of the emotions, both a biological response to the external environment [20] and the result of a cultural settling [21], a more comprehensive theory of emotional arousal [22,23] has been considered, employing four so called primary emotions: assertive-anger, aversion-fear, satisfactionhappiness and disappointment-sadness). The wearable display can be turned on and off, allowing the user to choose the people to display his/her grief to; thus, to operate a selection of the people with whom sharing his/her own feelings or starting a conversation. Switching off the wearable does not interrupt the home station activity, which continues printing 3D objects on the basis of the user’s emotional state change. These artefacts can be stored by the user for reflecting on the grieving process retrospectively. Such a selfreflection activity constitutes part of the user’s mourning process. Looking back over different periods of time, the user may gain awareness about his/her own progress and assess the evolution of his/her emotional states over time. Such a reflective process can be of positive influence for the user’s resilience and capability to project himself/herself to the future.
In conclusion, both the display on the wearable and the artefact created by the home station are intended either to start conversations with relatives and acquaintances and to foster a self-reflective practice on the grieving process.
Co-Constructing Stories The concept was evaluated using the co-constructing stories [19] by three of the six interview participants. Two of the participants noted that the concept was appealing, but pointed out that that it would be a better fit for others rather than for them.
Figure 5: A sketch of the wearable device that displays the emotions of the user.
One of the participants would like to embed within the wearable a personal artefact of the lost loved one, like ash from the cremation, a piece of hair or something written by the deceased, transforming it into a relic. Another participant expressed the idea of receiving a motivating incentive whenever the user demonstrated a positive attitude through the mourning process. The connection between the wearable device and the artefact generated at home was also evaluated, with one participant indicating that the emotion chronicle that is recorded by the home station could also be valuable for professionals (psychiatrists and or psychologists) who are monitoring the condition of the mourner. The user would be able to pinpoint to certain times or periods and reflect upon them while the monitoring specialist interpreted them.
Figure 6: A rendering of the home station that produces physical representations of the user’s mourning process (see appendix D-F).
A participant shared his wish to be able to have full control over which moments should be printed and which not and have the ability to customise it further since he valued discretion during his grieving process.
Another suggestion was that the wearable could be shaped into various forms; from a necklace to a wristband or even a ring. One of the participants suggested that selected relatives and friends could be involved in this concept as well; through sharing among them a number of these interconnected devices which would provide insight on the mental image of the person in bereavement; thus, facilitating contact and support to and from each other.
Discussion Upon such a limited user evaluation sample as in the final stage of the research, it is difficult to draw solid conclusions on the real value of the concept. The contribution that the design might offer to this target group is of speculative nature. Nevertheless, the coconstructing stories evaluation brought interesting insights to surface. The proposed design consists of two interconnected devices; a wearable and another device that acts as a base. The wearable is the core interaction device, while the home station has the role of a reflection tool. However, also the wearable enables the user to reflect upon his/her feelings, though in a different way as the context of use encompasses the everyday life activities. One of the participants suggested that the reflection tool could be embedded in the wearable or included in an additional service (e.g. the possibility for the users to order an abstract painting of their mourning progress by uploading their data to a web service). During the evaluation sessions, even though the core concept of the design was to facilitate or even initiate conversations (between the mourner and the close circle of relatives and friends on the subject of
mourning), the participants were mainly interested in the prospect of self-reflecting on their mourning process through the proposed design. Due to the fact that the ‘conversation-starter’ function of the design was poorly communicated, the participants tended to attribute more value on the reflection tool generated by the home station device than on the wearable. It is worth to mention that such a need to focus on the contemplative character of the experience of mourning, is consistent with the idea that reconstructing the meaning of the experience of loss, plays a crucial role in the grieving process [16]. In this regard, enabling the users to develop their narration by making the entire system (wearable and home device) more controllable, may foster a therapeutic grieving process based on the elaboration of a heartfelt narrative strategy (according to [16]). Another significant insight gained from the evaluation session is the role of the siblings and close friends in the process of mourning. One of the interviewees suggested involving a small and selected group of loved ones within the interaction, by designing a family of wearables connected to each other. The idea is to either give the bereaved person the opportunity to establish a closer contact with his/her loved ones and to make the latter more aware about his/her emotional state change. By visualising the mourner’s emotional state over time, the dear ones involved would feel directly “called” to support him/her (e.g. making a phone call or going to visit him/her). Moreover, such a way of mourning fosters an active role of the bereaved person as he/she has to select a circle of loved and trusted people, distributing them this sort of “magic object” which enshrines his/her bonds with them.
In this respect, the same participant also suggested enhancing the mourner’s role by giving him/her the power of interrupting the activity of the home device, only including in the “3D visualisation” of the emotional states what the user wishes. Being responsible for choosing which moments of his/her life and related emotional states he/she wants to be “translated” in a tangible shape, the user/mourner is expected to be more aware of his/her feelings and engaged in a selfreflective process. However, it is worth to mention that such a need to be in full control of the outcome of the interaction with the wearable device, is related to the opportunity the interviewee mentioned in the evaluation session, of selectively excluding particular moments from the “3D translation”. Retrospectively, such a necessity to be empowered of potentially avoiding to “translate” specific moments/emotional states, suggests emotional engagement being driven by motivation. Although relevant to empathy, the Zaki’s motivated model [21], with particular regard to the psychological mechanisms of avoidance, seems to explain the nature of such a need and related behaviour. Adding a tailor-made option to the wearable could, potentially, assist the user in associating the device to the lost loved one; transforming the proposed ritual of fidgeting with the device when thinking of the loved one even stronger and meaningful. The character of such a customised feature varies as such: from ash out of a cremation, to photographic material, to personal letters from the deceased, to a physical keepsake of sentimental value. The proposed feature adds another level of difficulty when required to design an adjustable device; one that can accommodate all the mementoes
the user wants to include. Consequently, further research on the type of tokens the users would consider most valuable to personalise the said wearable with is required. Further evaluation is required to find out if a wearable as the one proposed in this paper has the capacity to facilitate conversations on both the mourning process and the late loved one. As it may, close relatives are most likely to initiate conversation upon the wearable during their first encounters with it. However, the novelty effect might eventually vanish and, along with it, their interest about the artefact and what it represents.
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Conclusion This paper is an attempt to design through empathy with the end user, within the context of mourning. Through the experience of an empathy game [11,12], interviews and co-constructing stories the authors of this paper achieved empathy with a quite vulnerable and sensitive user group. In virtue of the aforementioned research methods, core principle and values were identified and employed to envision, develop and evaluate a design concept focused on alleviating the mourning process.
Acknowledgements The authors of this paper would like to thank professors Jacques Terken and Berry J.H Eggen for the support and guidance throughout this elective, DELA coĂśperatie for their insights, and all interviewees for their help and willingness to discuss such a difficult subject as well as provide constructive feedback upon the proposed design.
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Designing Pleasurable Products and Interfaces (DPPI '11). ACM, New York, NY, USA, , Article 13 , 8 pages. DOI=http://dx.doi.org/10.1145/2347504.2347519 20. Zaki, J. Empathy: A motivated account. Psychological Bulletin 140, 6 (2014), 1608-1647.
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14. Konigsberg, R. The truth about grief. Simon & Schuster, New York, 2011. 15. Bonanno, G. The other side of sadness. Basic Books, New York, 2009. 16. Neimeyer, R. Narrative strategies in grief therapy. Journal of Constructivist Psychology 12, 1 (1999), 65-85. 17. Herbert, W. “Mourning and memory: a paradoxical grief”, Association for Psychology Science, January 2013. [Online]. Available: http://www.psychologicalscience.org/index.php/ne ws/were-only-human/mourning-and-memory-aparadoxical-grief.html 18. Berezin, R. “ Mourning – Death, Loss, Trauma and Psychotherapy”, Psychology, March 2015. [Online]. Available: https://www.psychologytoday.com/blog/thetheater-the-brain/201503/mourning-death-losstrauma-and-psychotherapy 19. Derya Ozcelik, Javier Quevedo-Fernandez, Jos Thalen, and Jacques Terken. 2011. Engaging users in the early phases of the design process: attitudes, concerns and challenges from industrial practice. In Proceedings of the 2011 Conference on
Appendix A: Empathy Game Protocol
Appendix B: Affinity Diagram
Triggers / Memory
Memories (preservation)
Values / Mindset
Time+importance
of re-inventing yourself without your
desire to keep the memory of the
Live life at most, cherish moments,
Over time mourning becomes less
loved one.
lost one alive
find joy in the little things in life
intense
Context
Motivation / change
Context deponolay plays a huge role
The mourning process is also process
Phone / ringtone triggers memories
in the way emotions are felt and the
songs + smells
exp. of mourning is lined.
Dream of/about the lost loved one
Users focused on some activity
keeping memories alive
Relief if the person who passed away
(usually daily) which could strongly
-> afraid of forgetting
was suffering from meauralde
motivate them to come [beon] to
disease.
their ordinary life and enjoy it.
the mind tends to forget
life is not for granted have an impact on others in society
Do not push them to forget or feel
there has to be a meaning
happy -> people need time
changes in routine? meaning in something life is more meaningfull, do not spare any moment Bereavement can be a relieving exp.
conception of life changed after the
depending on the circumstances.
Haning to to something else
Seeing flashes of the lost loved ones
-> that changes the way mourning is
-> routine, work, carreer, others,
habits and reactions
exp.
carity acts, sports
Users reach an emotional peak when
Gets harder remembering his face...
->
At the beginning they are not as sad
life can end at any time, suddenly
as when some months have passed
Interviewees experience a moment
they tell the story within the interview
experience
in which they felt to be more aware users focussed on physical activity
of the value of life
Mourning takes time
Boudaries -thresholds
Anger towards people that don't
The mourning process starts when
hitting a wall -> single answers to
seem to enjoy moments with their
you hear your loved one is ill and will
questions
loved ones
die because of it.
Users went through some stages even though the latter were not consiously experienced (only after something rationalising the place higher value on family
experience).
Control
Culture
Rituals - remembering
Positivity
Shock
Culture and mindset plays a You cannot remove sorrow role in they way you mourn by experiencing other/happy and how bereavement events. It follows you should be experienced/dealt arround. with.
Coping with..
one user needed to perform rituals in order to cope with the shock: listening to music, light on candles etc.
"preparing the funeral is an essential part of the mourning process"
Living emotions and not First year was like living in a suppressing them helps a dazed state lot -> cultural refence
Even if you know in what state/phase of mourning you are in, you have no control over it.
cultured events help in preserving memory + gather family together
"I like that there is a place, where I can go to and konw that a piece of mom and dad is there."
Time of reconnecting with loved ones -> draw power/will form other people
Shock can be experienced when the death occurs unexpectedly
"You want everyone to stop and aknowledge your loss."
S. once in a while goes to the chruch and lights a candle in memory of lost one.
find new 'partners' to do activities that were done before with person that passed away
Close after death life was like living in a small buble
Character and sensitivity of the person influenced either the time for getting over and the way emotionally they experienced mourning.
Keeping a facade of a strong person
second year was lving in a state of anger taking care of and for the loved who passed away canb e experienced as paying a (last) tribute to that person.
Converstation
Realisation
people need to discuss about stuff other tahn their griefs -> get their mind away from it.
"Now, i am alone"
meeting with talking groups for mourning helps
After the first period -> the realisation hits hareder (slap in the face)
"talking about the person is very important in the mourning process"
Realisation of losing loved and that the person is not coming back is a very strong emotion"
Interviewees needed emotional support from beloved friends and family
People can accept/experience death easier if they are prepared for it.
The attention from relatives for your grieve afterwards is nice" If people want to talk about it you should give tem the chance it feels good to share your greive with people you love"
Appendix C: Flow Chart
Appendix D: The Wearable
Appendix E: The Home Station
Appendix F: 3D printed Artefact
Appendix G: Sensitizing Story
Appendix H: Visionary Story