Forget Me Not

Forget Me Not: ConnectingPalliative Patients and Their LovedOnes

Torben WallbaumOFFIS - Institute forInformation TechnologyEscherweg 226121 Oldenburg, [email protected]

Wilko HeutenOFFIS - Institute forInformation TechnologyEscherweg 226121 Oldenburg, [email protected]

Janko TimmermannOFFIS - Institute forInformation TechnologyEscherweg 226121 Oldenburg, [email protected]

Susanne BollUniversity of OldenburgAmmerlaender Heerstrasse114-11826129 Oldenburg, [email protected]

Permission to make digital or hard copies of part or all of this work forpersonal or classroom use is granted without fee provided that copies are notmade or distributed for profit or commercial advantage and that copies bearthis notice and the full citation on the first page. Copyrights for third-partycomponents of this work must be honored. For all other uses, contact theowner/author(s). Copyright is held by the author/owner(s).CHI’15 Extended Abstracts, April 18–23, 2015, Seoul, Republic of Korea.ACM 978-1-4503-3146-3/15/04.http://dx.doi.org/10.1145/2702613.2732772

AbstractInterpersonal social interaction, building relationships andthe communication with others are key needs of everyhuman being. In particular, people who are suffering froma serious illness will often experience a strong desire tocommunicate how they feel, their worries and sorrows, orimportant experiences to gain support from people theytrust like friends & relatives. In this work we discuss therequirements for the design of unobtrusive technologies tosupport the communication between patients and theirrelatives. We also present design concepts and prototypesbased on these requirements. These devices are especiallyuseful when illness inhibits the patient from usingconventional methods of communication or if the patientdoesn’t wish to burden their loved ones with the depth ofintimacy they crave.

Author Keywordssocial interaction; nonverbal communication; tangibleinteraction

ACM Classification KeywordsH.5.m [Information interfaces and presentation (e.g.,HCI)]: Miscellaneous.

Work-in-Progress CHI 2015, Crossings, Seoul, Korea

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MotivationPeople who suffer from a serious illness, often wish tokeep in touch with relatives and close friends [4]. Theneed for ongoing social participation and empathy areoften the main reasons for interpersonal interaction withrelatives. The enhancement and simplification ofinterpersonal communication methods might help thepatient to reduce her/his risk for additional psycho-socialproblems [7]. At the same time, they assist the patient inkeeping in touch with relatives and friends, and thussupport the patient in coping with a serious illness.

Requirement analysisIn this paper, we present insights gained throughqualitative interviews with experts in the field of palliativecare (physicians, carers, and relatives of patients). Due toan ongoing ethical board clearance, we will also includepatients in later interviews. According to our requirementanalysis, there are various reasons for missed opportunitiesto communicate regularly with relatives, while usingconventional communication methods like the telephone.The main reasons for no or irregular communication are:

Need for Communication The need for socialinteraction and communication with others can varyduring the course of a serious illness. TheKubler-Ross model [3] describes these changes asthe five stages of grief, that a person experiences,when faced with her/his own death or the loss of arelative. In each of these stages (denial, anger,bargaining, depression and acceptance) the patientmight need varying degrees of social contact tocope with her/his current situation. In some stagesthe patient might only want to feel the presence ofa relative, in others, s/he might want to talk tosomeone directly.

Physical or Mental Barriers Due to physical pain ormental health problems a patient might temporarilynot be able to use conventional communicationtechnologies. However, in such situations, the needfor closeness and social interaction is oftenparticularly high.

Dealing With the Illness The impending death of aloved one is often a very difficult time for familymembers and close friends. Some people might beuncertain in their dealing with the illness or theapproach of the patient. Due to their own anxiety,some people might reduce the social interactionwith the patient, which in turn leads to even biggercommunication barriers.

Time Constraints Based on their individual dailyschedules, some family members or friends mightnot be able to keep up the contact with a patient inthe way they want to. This might prevent themfrom checking regularly, whether the patient is wellor in need of something.

All the above factors might prevent regular socialinteraction between a patient and her/his relatives orfriends. To overcome these problems and to enable amore continuous interaction, we aim at designingcommunication technologies, which both create a feelingof connectedness and are able to display, whether thepatient is currently in need of direct communication.

These insights helped us to design a technology tosupport nonverbal and asynchronous messages betweenpatients and relatives, by creating design concepts andfunctional prototypes.


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Related WorkThe use of technology to support social interaction andsocial participation between relatives has been researchedin previous works. Tee et al. have explored thecommunication patterns among family members, who livespatially apart from each other [5]. Their study showsthat most of the participants had a strong need tocommunicate more often and more regular with familymembers than they actually do. The work reveals thatpeople miss out on communicating with each other due toasymmetries in their daily routines. When designingcommunication technologies, it is important that the userdoesn’t feel obliged to send messages or to shareinformation. On the contrary, the technology should helpthe user to feel connected with somebody in a positiveway, if and when they feel like it.

In an ethnographic study Tollmar et al. have shown howindividuals and groups feel attached to individual objectswhich they connect with memories or other people. Basedon this ethnographic study, Tollmar et al. developeddifferent designs: One of these is the tree-lamp. Thiselectronic device is located in two or more households.Certain areas of the lamp correspond with certain familymembers. An area, for example, stands for person A. Ifperson B touches that area, Person A will receive anotification from person B, a light on the correspondingtree-lamp of person A will switch on in person A’s ownhousehold [6].

Arreola et al. have individually developed a similarconcept based on the representation of presence oravailability by an ambient light display. The device usesmotion sensors to track the physical activity of individualsin the whole household; this activity is displayed byambient devices like an artificial plant or a light clock [1].

An evaluation with 65 older people and their carersshowed that participants felt more connected with eachother using these devices. Carers additionally felt a senseof security, when knowing that the older person is active.

Design ConceptsBelow, we describe two design concepts, of how newtechnological devices can support the needs of 1)Relativesand 2)Patients, as identified in the expert interviews withphysicians, carers and relatives. These particular devicesare aiming to encourage social interaction. We use lightto present nonverbal information to the user. Ourquestions regarding the realization of the two concepts arethe following:

• How does the user interact with the device –explicitly (directly) via touch or implicitly(indirectly) through presence in a room?

• Should we design a device, that only connects thepatient with one relative, or should we focus ondesigning a device, that connects the patient withtwo or more relatives?

• Should we use light colors (e.g. red, yellow orgreen) or light patterns (e.g. pulsing) to encode theinformation?

• How should messages be transmitted(continuously/discrete, synchronous/asynchronous)?

Based on a discussion with HCI experts from our team,we have designed a prototype, that is able to fulfill theneeds highlighted in the requirement analysis.


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Usage by RelativesEach relative or close friend of the patient who is willingto keep in close contact, but feels that s/he is not able todo so due to individual circumstances, can use the deviceto maintain a continuous feeling of connectedness withthe patient. As described in [1], people who have to takecare of a patient would feel a sense of security, if theycould check that the patient is well, even when they arenot able to visit the patient. Furthermore, most relativeswant to be informed, when the patient is in need of helpor wants to talk to overcome a sudden crisis.

Figure 1: Design sketch:Interactive flowers showing anactivity level. The right flowerhas been deactivated byremoving the blossom. The leftflower shows a pulsing light tosymbolize the wish for directcommunication. By touching aleaf the user can answer thisrequest, and show her/hisconsent.

We propose the use of an artificial flower (see Figure 1),which will be stationary in the home of each relative. Thisflower is connected with another flower, that is located atthe patient’s home. The relative’s flower displays anactivity score for the corresponding patient, defined byvarious ambient activity sensors, that could measure thepatient’s movements and physical activity her/his usageof household appliances, quality of sleep, and socialinteraction with others (these initial parameters may bechanged later, based on the results of a planned fieldevaluation).

The activity score is displayed with corresponding lightcolors. To represent the activity, we use a batterymetaphor, that has already been evaluated in previousworks [2] (green light represents a high activity level,while a red light means sedentary behavior) to show thatthe patient is active or may need some encouragement.

If the relative wishes to directly and explicitlycommunicate with the patient (for example on thetelephone), s/he can use the flower as an input device. Ifthe relative touches the leaf of a flower, a message is sentto the corresponding flower at the patient’s place and viceversa. The flower will then start to unobtrusively display

this message by showing a pulsing light pattern thatslowly fades out over time.

Based on our initial analysis, we could identify the needfor both parties to express the wish to temporarily notcommunicate with another person and therefore also notto share nonverbal information with others. To supportthis need technologically, we have designed a detachableblossom, which each user can remove to express the needfor privacy. When a user removes the blossom, theconnected flower will stop to visualize information andswitch off, to indicate that this user is not open forcommunication.

PatientOften patients, that suffer from a serious illness, have astrong need to communicate and to continue toparticipate socially in the life of others. To foster thefeeling of closeness with relatives and friends, the patientwill have several flowers. Each of these flowers representsa different relative.

The flower that represents a relative, will start to glow ina specific color, that again represents the activity score forthis relative. When the blossom is removed on therelative’s side, meaning the relative does not want tocommunicate, the flower’s light will fade out and switchoff.

The representation of a relative’s availability aims at twogoals: 1) Creating a sense of connectedness between thepatient and his loved ones and 2) Giving the patient anunderstanding of when a relative needs time forher-/himself. The mechanism to display a relative’s levelof activity, monitored by ambient sensors, also gives thepatient an opportunity to interact, when a relative is freeto join.


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Design and PrototypingThe designing process was based on the requirements asgiven in the design concepts we wanted to realize. Thedecision to use a flower-design is based on the goodacceptance of previous works [1] with similar designs. Itwas also driven by the ambition, to create a device whichdoes not appear technical and integrates well into theliving environment of younger and older adults.

Figure 2: Leaf made from softfabric and conductive thread toenable touch-input.

Figure 3: Prototypes for both communication partners. Left:several flowers for the patient. Right: one flower for therelative

In the set-up of the first prototype, we have used ArduinoUno prototyping boards. Communication between plantsis achieved by using a Wi-Fi Internet connection. To showdifferent light colors and light patterns we have usedcontrollable LED lights. We also have created a simpleweb interface in order to configure the flowers (e.g.setting up the colors for each plant, or defining the lightpattern for messages, or assigning flowers to their

owners). Apart from the possibility to show different lightcolors and light patterns, each flower should be able toreceive an input, to notify the user of the communicationwish of the other user.

To make the application as simple as possible andintegrate the functionality into a small and compactdesign (see figure 3), we decided to use the flower itself asan input and output device at the same time. Therefore,we have designed a leaf, that is able to recognize touchinputs using conductive threads (see Figure 2). The leafitself is made of textile fabric and filled with a softpadding.

In order to make it possible to easily remove the blossom,we have designed a custom made magnetic plug, whichenables power supply and data communication, when theblossom is attached to the flower. The removable part ofthe flower is wrapped in semi-transparent paper, whichhelps to diffuse the light of the flower.

Future WorkWe have presented a requirement analysis, design conceptand a first prototype of a tangible interface, that allowsseriously ill patients and their relatives to keep in closetouch by creating a sense of connectedness and byimplicitly communicating that someone is taking care.

The usage of such devices might be helpful, especiallywhen the use of conventional telecommunication is notpossible or not wanted. In the next step we will evaluatethe current prototype with members of a similar group ina field experiment (access to the target group will bepossible in later phases). Therefore, we plan to invite fiveto ten families, that each have at least one family memberliving spatially apart to use our system for two weeks, to


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learn how to use and how to integrate the system intotheir daily life.

We plan to use questionnaires to evaluate differentaspects of the system and to get feedback for a revisedprototype. We will use a) a questionnaire to learn aboutwhen and how people have used the system, b) a systemusability scale to get insights about possible design flawsand c) a subset of the ABCCT - Affective Benefits andCosts of Communication Technologies Questionnaire [8].This will allow us to learn about the emotional benefitsand costs of our system and enable us to measure how thesystem might create a feeling of connectedness betweenparticipants.

AcknowledgementsThis work was funded by the German Ministry forEducation and Research (BMBF) within the researchproject CONTACT.

References[1] Arreola, I., Morris, Z., Francisco, M., Connelly, K.,

Caine, K. E., and White, G. E. From checking on tochecking in: designing for low socio-economic statusolder adults. In CHI (2014), 1933–1936.

[2] Fortmann, J., Stratmann, T., Boll, S., Poppinga, B.,and Heuten, W. Make me move at work! an ambientlight display to increase physical activity. In PervasiveComputing Technologies for Healthcare(PervasiveHealth), 2013 7th International Conferenceon (May 2013), 274–277.

[3] Kubler-Ross, E. On death and dying. Simon andSchuster, 1997.

[4] Lanken, P. N., Terry, P. B., Delisser, H. M., Fahy,B. F., Hansen-Flaschen, J., Heffner, J. E., Levy, M.,Mularski, R. a., Osborne, M. L., Prendergast, T. J.,Rocker, G., Sibbald, W. J., Wilfond, B., andYankaskas, J. R. An official American ThoracicSociety clinical policy statement: palliative care forpatients with respiratory diseases and critical illnesses.American journal of respiratory and critical caremedicine 177, 8 (Apr. 2008), 912–27.

[5] Tee, K., Brush, A. B., and Inkpen, K. M. Exploringcommunication and sharing between extendedfamilies. International Journal of Human-ComputerStudies 67, 2 (Feb. 2009), 128–138.

[6] Tollmar, K., and Persson, J. Understanding remotepresence. In Proceedings of the second Nordicconference on Human-computer interaction, ACM(2002), 41–50.

[7] Vaisutis, K., Brereton, M., Robertson, T., Vetere, F.,Durick, J., Nansen, B., and Buys, L. Invisibleconnections: investigating older people’s emotions andsocial relations around objects. In Proceedings of the32nd annual ACM conference on Human factors incomputing systems, ACM (2014), 1937–1940.

[8] Yarosh, S., Markopoulos, P., and Abowd, G. D.Towards a questionnaire for measuring affectivebenefits and costs of communication technologies. InProceedings of the 17th ACM Conference onComputer Supported Cooperative Work & SocialComputing, CSCW ’14, ACM (New York, NY, USA,2014), 84–96.


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Forget Me Not

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