Patients in palliative care for cancer are treated at home if possible, with regular doctor’s appointments. The care of individuals with cancer is not an easy task. The responsibility of their care at home is in many cases taken over by a family member, e.g. a spouse or child. This creates emotional burdens and mental health risks on the family members – for example, one study found over half of all caregivers to evidence clinically significant levels of depression.

Monitoring caregivers’ emotional state could help detect and treat early symptoms of depression. Previous works have proposed continuous remote monitoring of depression by behavior analysis, some work has been done on tangible user interfaces (TUI) for users to self-report their emotions while at the same place, but these tools lack of adequate mechanisms for the self-reflection of self-reported data.  We propose to build a TUI for caregivers to easy the remotely self-reporting and self-reflection of emotions, in order to detect patterns that could signal depression, so that a medical professional may intervene and follow up at the palliative care patient’s next appointment.

This project will produce a working prototype of a TUI with the goal of inducing behavioral change in caregivers, and remotely monitoring their emotions in case a possible depressive state is detected. The challenges stem from proposing an interface that is unobtrusive, easy and pleasant to use, as well as improving depression detection through this continuous monitoring. In the future, we plan to adapt this prototype to serve in other healthcare scenarios, such as detecting postpartum depression, expressing emotions for children with autism, and expressing pain levels in palliative care patients.

We used multiple design methods to uncover requirements and begin designing our novel mobile persuasive system to encourage self-reflection of social isolation. Our approach was highly participatory, involving stakeholders of all kinds (e.g., physiologists, caregivers, social workers and patients) across all phases of the iterative design process. Building on our initial literature review, we conducted fieldwork to delve specifically into the challenges of social isolation, emotions, and communication practices of mother caregivers of children with cancer.

 

To understand the context and needs of mother caregivers, we interviewed six mothers who are the main caregivers for their children undergoing pediatric cancer treatment. All of these mothers were recruited and interviewed at the house for caregivers in which they live in Santiago, Chile..  The interviewer was one of the authors of the article, a young female Ph.D. student who is also a mother. We believe that the characteristics of the interviewer, as well as the fact that they were interviewed at their house, allowed them to be more relaxed and open. We transcribed and codified the interviews, selecting recurring topics and summarizing the thoughts of the interviewees (which we name E1 to E6 here) for each one. The interviews began with a brief demographic and computer-skills questionnaire, followed by questions about their routines and their emotional states. The interviewees ranged in age from 20 to 46 (avg: 37.2), and from 1 to 8 children (avg: 3). They were all living separated from their families by 120-1900 kms (straight line measurement, avg: 822).

In our formative study we found out caregivers are highly unaware of how caregiving tasks impact social isolation and their own emotions. To this aim we developed two prototypes, the Ohana Bear a TUI enabling caregivers report their emotions, and EmotionMingle, a mobile application promoting the self-reflection of emotions and isolation.

Our first prototype, the Ohana Bear allows caregivers to record their emotions, with the goal of registering how they feel and potentially sharing them with their families (Fuentes et.al. 2013a, Figura 1 left). The system was developed using a Gadgeteer FEZSpider Kit, using .NET Framework 4.0, .NET Micro Framework 4.2, GHI Electronics SDK and Visual Studio 2010. This kit was incorporated into a decorative, soothing element to decorate the mother and child’s space: a medium-sized teddy bear (Figure 1a, 1b). Information is stored in a SD card, and could be sent through IOStreams through Wifi, Bluetooth, or Ethernet modules, which were not available at the moment of implementation. The next sections describe the interaction capabilities of the system, and how they implement the emotional and communicative needs detailed in the previous section. The bear incorporates the screen in its stomach area. Each of the bear’s hands has a button that allows users to interact with it. The screen also allows touch to record an emotion. Figure 2 summarizes how a user may interact with the bear: (1) The screen displays an image (size 320×240) representing an emotion. (2) If the bear’s left hand is pressed, the displayed emotion changes. (3) The screen displays six different emotions, which change with each button press. (4) If the screen is tapped, the emotion is saved and (5) a message confirming this pops up. This records the data, along with contextual data in the SD card. (6) Whenever the bear’s right hand is pressed, the screen displays (7) a simple graph summarizing the saved emotions (grouped by whether they are positive, negative or neutral).

Our second prototype, support caregivers to reflect on their communication practices, emotions, and lifestyle, we designed, and are currently developing, a mobile application called EmotionMingle (Fuentes et. al. 20014b, Figure 1, middle and right). EmotionMingle is a mobile persuasive application that may help caregivers avoid social isolation. EmotionMingle has two interfaces. The first interface is a lightweight client of Facebook showing a slideshare of photographs that provides caregivers and pediatric patients with ambient awareness of their friends’ whereabouts (Figure 1a). The second interface is a widget that gives caregivers subtle awareness of caregivers’ communication practices, lifestyle, and emotions (Figure 1b). This system is designed to run as a widget in the personal mobile device of the caregiver. This interface shows a tree as a metaphor to show the “status” of a caregiver’s social network (Figure 1b, left). These visualizations may be accompanied with persuasive messages (Figure 1b, right) resulting from data correlations studying how communication practices and lifestyle affect the emotions of caregivers (e.g., “you feel relaxed after you go to the gym”). The persuasive messages should mainly be sent when caregivers feel low and isolated (Figure 1 right).

Figure 1. A screenshot of our first prototype of a TUI promoting self-reflection of emotions (left). A screenshot of our second prototype showing low social isolation (middle), and risk of isolation (right)

In collaboration with Valeria Herskovic (PUC)

Project participants

Carlos Hernandez, M.Sc. Student (see more about carlos…)
e: hflores[at]cicese[dot]edu[dot]mx
Research interes …

Monica Tentori, Ph.D., Assistant Professor (see more about monica …)
e: mten …

In collaboration with Ana I. Martinez-Garcia (CICESE)

Related publications to the project

  • Fuentes, C., Hernandez, C., Escobedo, L, Herskovic, V., Tentori, M., (accepted) Promoting self-reflection of social isolation through persuasive mobile technologies: The case of mother caregivers of children with cancer. International Journal of Human Computer Interaction.

  • Fuentes, C., V. Herskovic1, J. Heysen, M. Tentori    (2013) ”Towards a technology for caregivers’ emotional expression and self-reflection, in proceedings of UCAmi ’13. The 7th international conference on Ubiquitous Computing and Ambient Intelligence. December 1-6, 2013. Guanacaste, Costa Rica. Springer

Sponsored by

Microsoft LACCIR