Beyond the Grave: Facebook as a Site for the Expansion of Death and Mourning.

Online identities survive the deaths of those they represent, leaving friends and families to struggle with the appropriate ways to incorporate these identities into the practices of grief and mourning, raising important questions. How are practices of online memorialization connected to conventional rituals of grief and mourning? What is the role of online digital identity postmortem? How do trajectories of death and dying incorporate both online and offline concerns? Based on our qualitative study of death and mourning online, we identify the way that social networking sites enable expansion-temporally, spatially, and socially-of public mourning. Rather than looking at online practices as disruptions of traditional practices of grief and memorialization, we examine them as new sites in which public mourning takes place. Keywords death, dying, bereavement, social network sites, Facebook In the few short years since its launch, Facebook has permeated the daily lives of its users. More than just a space where one can craft an online profile or connect with other users, Facebook is a space where one can share the details of one's life, from the mundane ("Joe is enjoying his morning coffee") to the monumental ("Joe is engaged"). As Facebook has become further integrated into both the everyday and major events of our lives, and its user base has become both larger and more diverse, practices surrounding death have likewise begun to emerge. c Jed R. Brubaker, Gillian R. Hayes, and Paul Dourish We are grateful to all of those who participated in this study. We are also grateful to Margarita Rayzberg, Lynn Dombrowski, Ellie Harmon, and Sen Hirano, who provided feedback during the writing of this piece. This work was supported in part by the National Science Foundation under EAGER number 1042678. Address correspondence to Jed R. Brubaker, Department of Informatics, Donald Bren Hall 5042, Donald Bren School of Information and Computer Sciences, University of California, Irvine, Irvine, CA 92697-3440, USA. Web: http://www.jedbrubaker.com; E-mail: jed. [email protected] While existing work has documented how bereaved users reappropriate social network sites (SNSs) to memorialize the dead postmortem (e.g., Brubaker and Hayes 2011; Carroll and Landry 2010; DeGroot 2008), in this article we adopt a perimortem perspective and turn our attention to the experiences of users during the time surrounding death. Specifically, we consider the ways in which Facebook is associated with an expansion of death-related experiences-temporally, spatially, and socially. Facebook creates a new setting for death and grieving-one that is broadly public with an ongoing integration into daily life. Critically, this is not simply about death, but about the trajectories of social engagement around death-in preparation, at the moment of passing, in the discovery of the death of a friend, and in the ongoing memorialization and grieving. In this article, we present findings from interviews conducted during an ongoing study of death in the context of SNSs. Based on an analysis of qualitative data from interviews with sixteen Facebook users, we highlight the role of Facebook in learning about the death of a friend, providing a mediated space for grieving and remembrance, and participating in an expanding set of death-and griefrelated practices. This article is structured as follows: We first provide background from the field of death and dying. We then review related literature focused on online systems and death-including collaborative systems, cybermemorials, and SNSs. We then describe our methods and results of this study. We close with a discussion of the relationship between SNS activities and the evolving ecology of deathrelated practices in which Facebook is situated. RELATED WORK The American Way of Death Cultural beliefs are deeply embedded within human experiences of grief and practices around death. Kastenbau

"Will I always be not social?": Re-Conceptualizing Sociality in the Context of a Minecraft Community for Autism

Traditional face-to-face social interactions can be challenging for individuals with autism, leading some to perceive and categorize them as less social than their typically-developing peers. Individuals with autism may even see themselves as less social relative to their peers. Online communities can provide an alternative venue for social expression, enabling different types of communication beyond face-to-face, oral interaction. Using ethnographic methods, we studied the communication ecology that has emerged around a Minecraft server for children with autism and their allies. Our analysis shows how members of this community search for, practice, and define sociality through a variety of communication channels. These findings suggest an expansion in how sociality has traditionally been conceptualized for individuals with autism

From interaction to performance with public displays

Abstract Interacting with public displays involves more than what happens between individuals and the system; it also concerns how people experience others around and through those displays. In this paper, we use ''performance'' as an analytical lens for understanding experiences with a public display called rhythIMs and explore how displays shift social interaction through their mediation. By performance, we refer to a situation in which people are on display and orient themselves toward an audience that may be co-located, imagined, or virtual. To understand interaction with public displays, we use two related notions of collectives-audiences and groups-to highlight the ways in which people orient to each other through public displays. Drawing examples from rhythIMs, a public display that shows patterns of instant messaging and physical presence, we demonstrate that there can be multiple, heterogeneous audiences and show how people experience these different types of collectives in various ways. By taking a performance perspective, we are able to understand how audiences that were not physically co-present with participants still influenced participants' interpretations and interactions with rhythIMs. This extension of the traditional notion of audience illuminates the roles audiences can play in a performance

Chemokine receptors coordinately regulate macrophage dynamics and mammary gland development

Macrophages are key regulators of developmental processes, including those involved in mammary gland development. We previously demonstrated that the atypical chemokine receptor, ACKR2, contributes to control of ductal epithelial branching in the developing mammary gland by regulating macrophage dynamics. ACKR2 is a chemokine-scavenging receptor, which mediates its effects through collaboration with inflammatory chemokine receptors (iCCRs). Here we reveal reciprocal regulation of branching morphogenesis in the mammary gland, whereby stromal ACKR2 modulates levels of the shared ligand CCL7 to control the movement of a key population of CCR1-expressing macrophages to the ductal epithelium. In addition, estrogen, which is essential for ductal elongation during puberty, upregulates CCR1 expression on macrophages. The age at which girls develop breasts is decreasing, which raises the risk of diseases including breast cancer. This study presents a previously unknown mechanism controlling the rate of mammary gland development during puberty and highlights potential therapeutic targets

The atypical chemokine receptor Ackr2 constrains NK cell migratory activity and promotes metastasis

Chemokines have been shown to be essential players in a range of cancer contexts. In this study, we demonstrate that mice deficient in the atypical chemokine receptor Ackr2 display impaired development of metastasis in vivo in both cell line and spontaneous models. Further analysis reveals that this relates to increased expression of the chemokine receptor CCR2, specifically by KLRG1+ NK cells from the Ackr2−/− mice. This leads to increased recruitment of KLRG1+ NK cells to CCL2-expressing tumors and enhanced tumor killing. Together, these data indicate that Ackr2 limits the expression of CCR2 on NK cells and restricts their tumoricidal activity. Our data have important implications for our understanding of the roles for chemokines in the metastatic process and highlight Ackr2 and CCR2 as potentially manipulable therapeutic targets in metastasis

When Worlds Collide: Boundary Management of Adolescent and Young Adult Childhood Cancer Survivors and Caregivers

Adolescent and young adult childhood cancer survivors experience health complications, late or long-term biomedical complications, as well as economic and psychosocial challenges that can have a lifelong impact on their quality-of-life. As childhood cancer survivors transition into adulthood, they must learn to balance their identity development with demands of everyday life and the near- and long-term consequences of their cancer experience, all of which have implications for the ways they use existing technologies and the design of novel technologies. In this study, we interviewed 24 childhood cancer survivors and six caregivers about their cancer survivorship experiences. The results of our analysis indicate that the challenges of transitioning to adulthood as a cancer survivor necessitate the development and management of multiple societal, relational, and personal boundaries, processes that social computing technologies can help or hinder. This paper contributes to the empirical understanding of adolescent and young adult cancer survivors’ social experiences. We further contribute sociotechnical design provocations for researchers, designers, and community members to support survivors

User Response to Facebook's Custom Gender Options

Facebook’s recent implementation of “custom” gender options and gender-neutral pronouns provided transgender and gender-non-conforming users with new ways to represent gender identity online. We analyze user response to and use of these affordances. We found that while many transgender and gender non-conforming Facebook users used and appreciated the new options for gender representation, the system still constrained self-presentation for some. Additionally, use of custom gender options complicated gender identity disclosure for many participants. Results highlight tensions around the ability of classification systems to categorize identities.ye

Exploring Gender, Race, and Sexuality with Social Media Data

We present a full day, hands-on workshop that will provide an opportunity for researchers in our community to explore social media data and ask questions about the intersectionalities of gender, race, and sexuality. We will discuss scholarly questions and methods related to application of social media data analysis and the implications of using, presenting, and communicating results in research contexts. Workshop participants will learn how to access and analyze data using various tools and methods, drawing specifically on a Twitter dataset collected May-June 2014 during the trending hashtag #YesAllWomen. Selected participants will also present their own work to foster opportunities for targeted discussion and continued collaboration. The goals of this workshop are not only to build community but also to enable researchers to begin collecting and analyzing social media data to further their own work. The workshop emphasizes the importance of analyzing social media data ethically, respecting and engaging the sometimes vulnerable and marginalized populations who may have generated the data.ye

Parents’ Perspectives on a Smartwatch Intervention for Children with ADHD: Rapid Deployment and Feasibility Evaluation of a Pilot Intervention to Support Distance Learning During COVID-19

Distance learning in response to the COVID-19 pandemic presented tremendous challenges for many families. Parents were expected to support children’s learning, often while also working from home. Students with Attention Deficit Hyperactivity Disorder (ADHD) are at particularly high risk for setbacks due to difficulties with organization and increased risk of not participating in scheduled online learning. This paper explores how smartwatch technology, including timing notifications, can support children with ADHD during distance learning due to COVID-19. We implemented a 6-week pilot study of a Digital Health Intervention (DHI) with ten families. The DHI included a smartwatch and a smartphone. Google calendars were synchronized across devices to guide children through daily schedules. After the sixth week, we conducted parent interviews to understand the use of smartwatches and the impact on children’s functioning, and we collected physiological data directly from the smartwatch. Our results demonstrated that children successfully adopted the use of the smartwatch, and parents believed the intervention was helpful, especially in supporting the development of organizational skills in their children. Overall, we illustrate how even simple DHIs, such as using smartwatches to promote daily organization and task completion, have the potential to support children and families, particularly during periods of distance learning. We include practical suggestions to help professionals teach children with ADHD to use smartwatches to improve organization and task completion, especially as it applies to supporting remote instruction

Wearable assistive technologies for autism : opportunities and challenges

Autism is a lifelong developmental condition that affects how people perceive the world and interact with others. Challenges with typical social engagement, common in the autism experience, can have a significant negative impact on the quality of life of individuals and families living with autism. Recent advances in sensing, intelligent, and interactive technologies can enable new forms of assistive and augmentative technologies to support social interactions. However, researchers have not yet demonstrated effectiveness of these technologies in long-term real-world use. This paper presents an overview of social and sensory challenges of autism, which offer great opportunities and challenges for the design and development of assistive technologies. We review the existing work on developing wearable technologies for autism particularly to assist social interactions, analyse their potential and limitations, and discuss future research directions.PostprintPeer reviewe