Michael Massimi

A death in the family: opportunities for designing technologies for the bereaved

Following the death of a loved one, bereaved family members use technology in several ways to respond to their loss. However, very little is known about how technology intersects with the lives of the bereaved. We present a survey and interview study which examines how the bereaved inherit personal digital devices, use technology to remember the deceased, and reflect on their own digital estates. The study provides one of the first characterizations of technology use by the bereaved, and presents a set of empirically-grounded design opportunities and challenges.

Matters of life and death: locating the end of life in lifespan-oriented hci research

Examining developmental periods of the human lifespan has been a useful tradition for focusing HCI research (e.g., technologies for children or the elderly). In this paper, we identify the end of life as another period of the human lifespan that merits consideration by technology designers and researchers. This paper maps out current and future research in HCI at the end of life by first describing how this area raises questions concerning materiality and artifacts, social identities, temporality and methodologies. Having provided a description of the richness of this area, we then frame it against HCI traditions and practices in an orientation we term the lifespan-oriented approach. This paper maps early efforts in end of life research, structures and suggests areas for continued work, and situates the end of life among existing areas of HCI research.

Dealing with death in design: developing systems for the bereaved

Increasingly, systems are being developed and used in ways that involve end of life issues such as death, dying, and bereavement. Yet design considerations and guidelines for technologists working in this sensitive area are not well-established. We therefore report on exploratory fieldwork consisting of focus groups, observations, and consultation with bereavement experts aimed at understanding how technology might be designed to support bereaved parents. From this fieldwork, we derive a set of considerations useful for researchers and designers developing systems that deal specifically with bereavement, and with the end of life more broadly. These considerations focus on interpersonal communication, new ways of being in the world, and materiality. We conclude with a distillation of these considerations into practical design guidelines for working in this area.

Reconstructing the Past: Personal Memory Technologies Are Not Just Personal and Not Just for Memory

Research has shown that personal memory technologies are a promising way to address the needs of older adults with memory impairments. In this article, we review three recently completed studies that evaluated technologies for personal memories intended for persons with Alzheimers disease (AD) or mild cognitive impairment (MCI). In the first study, we worked with 12 participants with AD or MCI and their families to construct DVD-based Multimedia Biographies that depicted prominent events, people, and places from the participants past. We then evaluated over a period of 6 months psychosocial effects that viewing the biographies had on the participants and their family members. These effects included stimulating reminiscence of past events, triggering predominantly positive emotions of happiness and occasional moments of sadness, and engaging conversations with family members. In our second study, we designed a home-based ambient display that allowed a man with AD to similarly review his past life, in combination with recent photos automatically captured by a lifelogging device called SenseCam. Psychometric tests and semistructured interviews revealed how the intervention appeared to improve the participants sense of self and lower apathy. In our final study of 5 cognitively impaired participants we compared representations of recent experiences captured with SenseCam in 3 ways: with the raw image stream, with a slide show consisting of a selected number of SenseCam images narrated by a family member, and with a control reviewing no images. Results included evidence that reviewing SenseCam images improved episodic recall for personal events depicted in the images for 4 of the 5 participants. Based on lessons learned from this research, we suggest that personal memory technologies should not just be framed as systems for augmenting an individual users capacity for accurate recall of personal events, but instead should support groups of people such as members of a family in telling their life stories. This conception yields benefits beyond the support of memory, such as fostering a sense of self and strengthening interpersonal relationships with family members. We conclude the article by presenting design considerations to help guide and inform the development and evaluation of future “personal memory” technologies.

An exploratory case study of the impact of ambient biographical displays on identity in a patient with Alzheimer's disease

One of the most troubling symptoms of Alzheimers disease is the loss of the patients sense of identity. This loss complicates relationships, increases apathy, and generally impedes quality of life for the patient. We describe a novel in-home ambient display called Biography Theatre that cycles through music, photographs, movies, and narratives drawn from the patients past and current life. We conducted an exploratory case study with an 84-year-old male with moderate-stage Alzheimers disease (Mr H). The study consisted of three phases: a baseline phase, a phase wherein autobiographical materials were collected and discussed, and a phase wherein the display was deployed in the home. The patient demonstrated improvement on standardised tests of apathy and positive self-identity, but did not improve on tests of autobiographical memory, anxiety, depression, and general cognition. We also report on caregiver reactions to the intervention and how the display helped them cope with and reinterpret their loved ones condition. This work suggests that interdisciplinary work involving “off the desktop” computing technologies may be a fruitful way to provide rehabilitative benefit for individuals with Alzheimers disease.

Flashlight jigsaw : an exploratory study of an ad-hoc multi-player game on public displays

As large displays become prevalent in public spaces, they could be employed to create novel game experiences for the public. We present an exploratory study of an ad-hoc multi-player game played on such public displays. The game, Flashlight Jigsaw, was deployed in a shared lab space and a public atrium for two weeks in total. Through interviews supported by observations and system logs we explored the experiences and behaviors of players and spectators. We also investigated the interrelationship between public display games and the spaces they are deployed in. The research resulted in findings regarding game play, communication, social interaction, spectatorship, and space and location around such a game. We use our findings to develop design implications for future public display games.

Understanding Recording Technologies in Everyday Life

Electronic recording and surveillance systems are arguably some of the most pervasive technologies in the world today. Despite this rapid proliferation and their study by many researchers, there is still work to be done in understanding how people reason about these technologies when they encounter them. In this article, the authors describe attitudes, perceptions, and concerns regarding electronic recording encountered in daily activities. They present data gathered from interviews grounded in real experiences that form the basis of a discussion for how people develop mental models about the intent and uses of a broad scope of recording technologies embedded in the world. Individual constructions of reality about current recording systems, including the people, places, and activities that surround them, provide insight into how design, technology, and policy can work together to provide appropriate information about the existence and uses of recording devices. These insights can lead to usable systems that allow individual users to make informed personal decisions.

Technologies for aging gracefully

Physiological Needs Two burgeoning examples of technology addressing physiological needs are health-information websites and health-support social media. The majority of Americans now use the Web to gather information about topics including diseases, treatments, alternative medicine, medications, doctors, hospitals, and health insurance [3]. Increasingly, on newsgroups, websites, and blogs, people are posting their own experiences and also commentaries about health or medical issues. These developments have the potential to enable senior citizens, as well as other members of society, to be more knowledgeable as they try to maintain a healthy lifestyle, and also to be better-educated consumers of healthcare. Challenges include being able to judge whether or not data that appears amnesia, aphasia, strokes, multiple sclerosis (MS), or vision loss— as well as normally aging senior citizens. We identify “sweet spots” where technology seems relevant to human need, and envision ways in which we could address a problem, then design, build, test, and, where possible, commercialize solutions. In other words, TAGlab conducts research for the journey through life (see also http://taglab. utoronto.ca/). Technology development to improve the lives of senior citizens may appropriately be framed in terms of the psychologist Abraham Maslow’s hierarchy of human needs (Figure 1). (TAGlab focuses on the top three levels, but we will describe projects at all five levels.) Biological or physiological needs include oxygen, food, water, warmth, fitness, and health. Safety needs are to feel safe and to be free from real or perceived danger. Love or social needs encompass the need for affection and a sense of belonging to family and a circle of friends. Esteem needs include the need to feel satisfied, selfconfident, and valuable; to engage in meaningful work and activities; We all know the world is aging. Yet the figures are staggering. The United Nations recently quantified the phenomenon as follows: Whereas 5.2 percent of the population was over 65 in the year 1950, this percentage is projected to grow to 15.9 percent in 2050, to 27.5 percent by 2150, and to 32.3 percent by 2300 [1]. The good news is modern medicine has made it possible for people to live longer. The bad news is most individuals who live a long life must combat sensory, motor, cognitive, and social challenges such as vision loss, poor hearing, mobility difficulties, memory loss, social isolation, and loneliness. Technology by itself cannot solve these problems. Yet technology designed to empower older adults and to make them more capable, resourceful, and independent can help. In response to this opportunity, in 2009 we formed the Technologies for Aging Gracefully lab (TAGlab). Our mission is to enable full participation in society by individuals with special needs—for example, people afflicted with Alzheimer’s disease (AD), mild cognitive impairment (MCI), in te ra c ti o n s M a y + j u n e 2 0 1 2

Exploring remembrance and social support behavior in an online bereavement support group

Designing interactive systems that sensitively engage with end of life issues is a key challenge for CSCW as more and more people turn to the Internet to grapple with the realities of death. However, there are few studies that document how specific remembrance or support features of bereavement websites are used in a real-world setting. This paper describes Besupp, a website where bereaved individuals can participate in online support groups. Three support groups used Besupp in a ten-week long deployment study. Based on this study, I describe how participants perceived and used the remembrance and social support features of the site. These results form the basis for a set of implications regarding the design of technologies for remembrance, social support, and bereavement more generally.

Life transitions and online health communities: reflecting on adoption, use, and disengagement

Online health communities are places where people can come together in order to exchange social support at a particular point in an individuals life. There are, however, relatively few accounts that look across multiple communities across the lifespan. In this paper, we reflect on four case studies of research on different online health communities in order to identify patterns in how individuals selectively adopt, use, and disengage from these communities throughout their lives. We argue that users leaving communities is not necessarily a failing of the sites design or purpose; rather, it is a logical reaction to changing life circumstances. In characterizing this pattern, we contribute a set of implications for design and management that bear consideration by online community designers, developers, moderators, and end users. Ultimately this may lead to a smoother transition from community to community and ensure that social support needs are being met more consistently in response to changing life circumstances.