As they enter long-term survivorship, young adult cancer survivors grow into Active Architects of personalized digital support ecosystems, strategically curating resources across diverse platforms, from social media to specialized forums. Previous HCI research has shown how these individuals use technology through the early stages of their journey, to both support their needs and leverage their strengths. However, less is known about how technology might support survivors’ transition from self-management (task-oriented illness management) to self-advocacy, involving systemic, outward-facing action. This paper adopts a reflexive-interventionist approach, grounded in an interview study with 14 young adult cancer survivors who were diagnosed across childhood and adolescence. We show how their practices evolve across the journey, from family-mediated interactions during acute illness to autonomous curation, community stewardship, and advocacy. We articulate design implications for supporting ecosystem curation, accounting for evolving user expertise, and creating pathways that honor both ongoing challenges and developing capabilities.

When a child is admitted to the hospital with a critical illness, their family must adapt and manage care and stress. CSCW researchers have shown the potential for collaborative technologies to support and augment care collaboration between patients and caregivers. However, as a field CSCW lacks a holistic, theory-driven understanding of how collaborative technologies might best augment and support the family caregiving circle as a socio-technical system. In this paper, we report findings from interviews with 14 parents of children with cancer admitted for extended hospitalizations. We use the resilience-based Family Adaptive Systems framework from family therapy as a lens to characterize their challenges and practices across four key subsystems: Emotion, Control, Meaning, and Maintenance. Then, we introduce a fifth system-the Information system-and draw on our empirical findings to suggest theory-driven opportunities for designing future collaborative technology to augment collaborative caregiving and enhance family resilience.

Meals are a central (and messy) part of family life. Previous design framings for mealtime technologies have focused on supporting dietary needs or social and celebratory interactions at the dinner table; however, family meals involve the coordination of many activities and complicated family dynamics. In this paper, we report on findings from interviews and design sessions with 18 families from the Midwestern United States (including both partners/parents and children) to uncover important family differences and tensions that arise around domestic meal experiences. Drawing on feminist theory, we unpack the work of feeding a family as a form of care, drawing attention to the social and emotional complexity of family meals. Critically situating our data within current design narratives, we propose the sensitizing concepts of generative and systemic discontents as a productive way towards troubling the design space of family-food interaction to contend with the struggles that are a part of everyday family meal experiences.

When a child is hospitalized with a serious illness, their family members must process emotional stress, quickly absorb complicated clinical information, and take on new caregiving tasks. They also have to coordinate with each other and with other family caregivers without abandoning existing work and home life responsibilities. Previous CSCW and HCI research has shown how the patient's experience changes across the illness journey, but less is known about the effect of this journey on family caregivers and their coordination work. CSCW technologies could support and augment family care coordination work across the journey, reducing stress levels and improving families' ability to stay connected and informed. In this paper, we report findings from an interview study we conducted with 14 parents of children undergoing extended hospitalization for cancer treatment. We propose the concept of caregiving coordination journeys and describe caregivers' current communication and coordination practices across different phases of the hospitalization journey, from diagnosis and early hospitalization to extended hospitalization and beyond. We characterize families' caregiving coordination routines across different time scales, and describe the current role of communication technologies in families' coordination practices. We then propose design opportunities for social computing technologies to support and augment families' communication and caregiving work during the hospitalization journey of their child.

Early recovery after substance use disorder (SUD) treatment is a period of high risk. The majority of people will relapse, often within weeks of completing treatment. In the modern era, re-entry upon completion of treatment includes both digital and non-digital spaces. Digital spaces, including social media, present unique challenges to the recovery journey. However, research has rarely focused on this critical period and the ways in which technology affect it. We conducted in-depth interviews with 29 participants (8 recoverees and 21 support professionals) across two treatment sites to explore this gap. Using an inductive thematic approach, we gained insights into digital social re-entry, a term that we introduce to describe the process of re-engaging with social spaces online. We describe the work of digital social re-entry, which includes 1) remaking social networks, 2) maintaining boundaries, 3) managing triggering content, 4) resisting access to substances, and 5) shifting personal identity. We conclude by characterizing strategies for navigating digital social re-entry and discussing ways to better support recoverees during this aspect of their recovery journey.

OBJECTIVE: To elicit novel ideas for informatics solutions to support individuals through the menopausal transition. (Note: We use "individuals experiencing menopause" and "experiences" rather than "symptoms" when possible to counter typical framing of menopause as a cisgender women's medical problem.). METHODS: A participatory design study was conducted 2015-2017 in the Western US. Two sessions were held with individuals experiencing menopause recruited from the general public; and 3 sessions with healthcare practitioners (HCPs) including nurses, physicians, and complementary and integrative health (CIH) practitioners were held. Participants designed technologies addressing informational needs and burdensome experiences. HCPs reflected on designs from participants experiencing menopause. Directed content analysis was used to analyze transcripts. RESULTS: Eight individuals experiencing menopause (n = 4 each session) and 18 HCPs (n = 10 CIH, n = 3 nurses, n = 5 physicians) participated. All participants provided ideas for solution purpose, hardware, software, features and functions, and data types. Individuals experiencing menopause designed technologies to help understand and prevent burdensome menopause experiences. HCPs designed technologies for tracking and facilitating communication. Compared to nurses and physicians, CIH practitioners suggested designs reframing menopause as a positive experience and accounted for the complex lives of individuals experiencing menopause, including stigma; these ideas corresponded to comments made by participants experiencing menopause. Participants from both populations were concerned about data confidentiality and technology accessibility. CONCLUSIONS: Participant generated design ideas included novel ideas and incorporated existing technologies. This study can inform the development of new technologies or repurposing of existing technologies to support individuals through the menopausal transition.

Eating disorders (EDs) are a worldwide public health concern that impact approximately 10% of the U.S. population. Our previous research characterized these behaviors across online spaces. These characterizations have used clinical terminology, and their lexical variants, to identify ED content online. However, previous HCI research on EDs (including our own) suffers from a lack of gender and cultural diversity. In this paper, we designed a follow-up study of online ED characterizations, extending our previous methodologies to focus specifically on male/masculine-related content. We highlight the similarities and differences found in the terminology utilized and media archetypes associated with the social media content. Finally, we discuss other considerations highlighted through our analysis of the male-related content that is missing from the previous research.

Online health communities (OHCs) allow people living with a shared diagnosis or medical condition to connect with peers for social support and advice. OHCs have been well studied in conditions like diabetes and cancer, but less is known about their role in enigmatic diseases with unknown or complex causal mechanisms. In this paper, we study one such condition: Vulvodynia, a chronic pain syndrome of the vulvar region. Through observations of and interviews with members of a vulvodynia Facebook group, we found that while the interaction types are broadly similar to those found in other OHCs, the women spent more time seeking basic information and building individualized management plans. They also encounter significant emotional and interpersonal challenges, which they discuss with each other. We use this study to extend the field's understanding of OHCs, and to propose implications for the design of self-tracking tools to support sensemaking in enigmatic conditions.

Game jams, which are game creation events in which developers design and build a game over a short period of time, have been shown to support participatory, active STEM learning. Game jams have expanded from their origins as physically co-located experiences and many are now conducted exclusively online. Though the co-located game jam has been noted as educational, little is known about how learning happens within online game jams. To better understand the ways online game jams support self-development, we interviewed fifteen online jam participants about their learning experiences during their jams. Additionally, we observed and analyzed several jams using activity theory. We found that online game jams support participants' learning through extensive feedback from others during and after the jam. Such feedback sessions were a key social and participatory learning elements for online jams, providing much-need social support. In contrast to the group-focused development in offline jams many participants in our study chose to develop games alone. Many individuals participated in online game jams regularly, treating them as a broader experience than singular events. We use these findings to discuss how we might better design for self-directed learning online and offer suggestions on how to better attune online game jams to the needs of participants.

The hospital setting creates a high-stakes environment where patients' lives depend on accurate tracking of health data. Despite recent work emphasizing the importance of patients' engagement in their own health care, less is known about how patients track their health and care in the hospital. Through interviews and design probes, we investigated hospitalized patients' tracking activity and analyzed our results using the stage-based personal informatics model. We used this model to understand how to support the tracking needs of hospitalized patients at each stage. In this paper, we discuss hospitalized patients' needs for collaboratively tracking their health with their care team. We suggest future extensions of the stage-based model to accommodate collaborative tracking situations, such as hospitals, where data is collected, analyzed, and acted on by multiple people. Our findings uncover new directions for HCI research and highlight ways to support patients in tracking their care and improving patient safety.

Live streaming-an emerging practice of broadcasting video of oneself in real time to an online audience-is often used by people to portray themselves engaged in a craft such as programming. Viewers of these 'creative streams' gather to watch the streamer at work and to interact with the streamer and other audience members. However, little is known about how creative streamers engage with their audience, how their viewership communities form and operate, and how creative streams may support learning. In this study, we used a participant-observer method to study game development streams on the live streaming site Twitch.tv. We found that live streams support the growth of learning-focused communities that mentor both the streamer and each other during and after streams. We show the influence of streamers in creating a space for learning and motivating learners. Finally, we discuss implications for online education and communities of practice.

Recovery from brain injury is a complex and longitudinal process consisting of clinical recovery, illness management, and personal recovery. Lack of initiatives to create awareness about expected recovery and tools for helping patients understand their progress make the personal recovery journey challenging and frustrating. In this paper, we discuss results from interviews with five post-acute brain injury patients about their needs and challenges in understanding their personal recovery.

Patient engagement leads to better health outcomes and experiences of health care. However, existing patient engagement systems in the hospital environment focus on the passive receipt of information by patients rather than the active contribution of the patient or caregiver as a partner in their care. Through interviews with hospitalized patients and their caregivers, we identify ways that patients and caregivers actively participate in their care. We describe the different roles patients and caregivers assume in interacting with their hospital care team. We then discuss how systems designed to support patient engagement in the hospital setting can promote active participation and help patients achieve better outcomes.

Patients going home after a hospitalization face many challenges. This transition period exposes patients to unnecessary risks related to inadequate preparation prior to leaving the hospital, potentially leading to errors and patient harm. Although patients engaging in self-management have better health outcomes and increased self-efficacy, little is known about the processes in place to support and develop these skills for patients leaving the hospital. Through qualitative interviews and observations of 28 patients during and after their hospitalizations, we explore the challenges they face transitioning from hospital care to self-management. We identify three key elements in this process: knowledge, resources, and self-efficacy. We describe how both system and individual factors contribute to breakdowns leading to ineffective patient management. This work expands our understanding of the unique challenges faced by patients during this difficult transition and uncovers important design opportunities for supporting crucial yet unmet patient needs.

Informal caregivers, such as close friends and family, play an important role in a hospital patient's care. Although CSCW researchers have shown the potential for social computing technologies to help patients and their caregivers manage chronic conditions and support health behavior change, few studies focus on caregivers' role during a multi-day hospital stay. To explore this space, we conducted an interview and observation study of patients and caregivers in the inpatient setting. In this paper, we describe how caregivers and patients coordinate and collaborate to manage patients' care and wellbeing during a hospital stay. We define and describe five roles caregivers adopt: companion, assistant, representative, navigator, and planner, and show how patients and caregivers negotiate these roles and responsibilities throughout a hospital stay. Finally, we identify key design considerations for technology to support patients and caregivers during a hospital stay.

In this paper, we present the results of a multi-year study of the social computing practices of 179 adolescents (Mage=12.4 years, SD=1.3; range: 10-14) living in a majority-minority lower-income urban neighborhood in the Southeast U.S. We investigate shifting social media practices using annual surveys and focus groups. We describe participants' social media use and motivations and show how that use has shifted over time. We show how participants identify social pressures and influences as well as specific behaviors including computer-mediated risky behaviors and self-harm. We discuss the implications of our findings for the CHI research community, including methodological challenges and the need for further study of computer-mediated harmful behaviors in youth populations. By demonstrating how large-scale trends are enacted on the ground, we describe participants' uses, motivations and behaviors as they deal with the increasing influence of technology in their social lives.

Personal health-tracking technologies have become a part of mainstream culture. Their growing popularity and widespread adoption present an opportunity for the design of new interventions to improve wellness and health. However, there is an increasing concern that these technologies are failing to inspire long-term adoption. In order to understand why users abandon personal health-tracking technologies, we analyzed advertisements of secondary sales of such technologies on Craigslist. We conducted iterative inductive and deductive analyses of approximately 1600 advertisements of personal health-tracking technologies posted over the course of one month across the US. We identify health motivations and rationales for abandonment and present a set of design implications. We call for improved theories that help translate between existing theories designed to explain psychological effects of health behavior change and the technologies that help people make those changes.

Computer-supported fitness interventions for adolescents have the potential to improve adolescents' attitudes and perceptions about physical activity through peer influence and interpersonal accountability. Past research has explored the potential of interventions based on competition and social-comparison mechanisms. We present a new approach: school-based, pervasive social fitness systems. We describe one such system: StepStream, a pedometer-based microblog we designed and deployed for four weeks with 42 US middle school students. StepStream users improved their attitudes about fitness and increased their sense of social support for fitness. The least-active students also increased their daily activity. We show that our school-based social fitness approach performed comparably in attitude and behavior change to more competitive or direct-comparison systems. These results expand the strategies available computer-supported fitness interventions. Our school-based social fitness approach to everyday adolescent health shows the potential for social computing systems to positively influence offline health behaviors in real-world settings.

Technology-based interventions for promoting health behavior-change frequently leverage multiplayer game mechanics such as group-based competitions. However, health interventions successful for groups writ large may not always translate to successful behavior change at the individual level. In this paper, we explore the tension between group and individual success, based on an empirical study on a long-term real-world deployment of a pervasive health game for youth. We report five distinctive player types along the dimensions of motivation, behavior, and influence on others. Based on the findings, we provide design suggestions to help game designers integrate group-based mechanisms that maximize intervention effectiveness.

Technology-based health behavior change interventions involving passive on-body sensing and feedback interfaces show promise for increasing participation in physical activity. However, the majority of prior studies are small-scale interventions that heavily rely on research teams for programmatic support. In larger-scale deployments, participants may have to take over setup and maintenance tasks. In this paper, we examine the "hidden work" involved with the large-scale deployment of a behavior change application in American schools. We offer insight into the coordination required to maintain such deployments, and identify unique challenges that arise when schoolchildren are the target of a behavior change intervention. Our findings highlight the behind-the-scenes coordination and management work required of adult facilitators in order to support pervasive health interventions for children in school environments. We offer advice to researchers and project managers attempting integration of technology-based health behavior change applications for children.

Active video games (AVG) have become widespread as more physical interfaces are introduced in video games. Lab based studies have indicated that AVGs can increase the amount and intensity of physical activity compared to non-active games and TV, however, the long-term effectiveness of AVGs has yet been established. In fact, most of the existing studies show a reduction of interest and participation over time. This paper presents our findings from a long-term, multi-site deployment of a pervasive health game, the American Horsepower Challenge (AHPC). Similar to previous studies, our findings also show reduced effectiveness of the game, but on a much larger scale. Moreover, we analyze reasons for this and report what kind of game related online and offline activities happened during the deployment. We argue that a shift of evaluation metrics and design goals is required to make real-world sustainable behavior changes. Based on empirical data, we propose three goals for AVGs---sustainability, adaptability and sociability. Behavior-changing games can learn how to achieve these goals from existing game genres, such as alternate reality games, location-based games, family games, and multiplayer online games etc.

Collaborative tagging mechanisms are integral to social computing applications in a variety of domains. Their expected benefits include simplified retrieval of digital content, as well as enhanced ability of a community to makes sense of the shared content. We examine the impact of collaborative tagging in context of nutrition management. In a controlled experiment we asked individuals to assess the nutritional value of meals based on photographic images and observed the impact of different types of tags and tagging mechanisms on individuals nutritional sensemaking. The results of the study show that tags enhance individuals' ability to remember the viewed meals. However, we found that some types of tags can be detrimental to sensemaking, rather than supporting it. These findings stress the importance of tagging vocabularies and suggest a need for expert moderation of community sensemaking.

With rising concerns about obesity and sedentary lifestyles in youth, there has been an increasing interest in understanding how pervasive and ubiquitous computing technologies can catalyze positive health behaviors in children and teens. School-based interventions seem like a natural choice, and ubiquitous computing technologies hold much promise for these interventions. Yet the literature contains little guidance for how to approach school-based ubicomp deployments. Grounded in our analysis of a large-scale US school-based intervention for promoting youth physical activity, we present an approach to the design and evaluation of school-based ubicomp that treats the school as a social institution. We show how the school regulates students' daily lives, drawing from work in the sociology of schools to create a framing for planning, executing and analyzing school-based ubicomp deployments. These insights will assist other researchers and designers engaging in deployments of ubiquitous computing systems in settings with established institutional structures.

The continuing epidemics of diabetes and obesity create much need for information technologies that can help individuals engage in proactive health management. Yet many of these technologies focus on such pragmatic issues as collecting and presenting health information and modifying individuals' behavior. At the same time, researchers in clinical community argue that individuals' perception of their identity has dramatic consequences for their health behaviors. In this paper we discuss results of a deployment study of a mobile health monitoring application. We show how individuals with considerable diabetes experience found a unique way to adopt this health-monitoring application to construct and negotiate their identities as persons with a chronic disease. We argue that viewing health management from identity construction perspective opens new opportunities for research and design in technologies for health.

In this paper, we present initial findings from the study of a digital photo-sharing website: Flickr.com. In particular, we argue that Flickr.com appears to support-for some people-a different set of photography practices, socialization styles, and perspectives on privacy that are unlike those described in previous research on consumer and amateur photographers. Further, through our examination of digital photographers' photowork activities-organizing, finding, sharing and receiving-we suggest that privacy concerns and lack of integration with existing communication channels have the potential to prevent the 'Kodak Culture' from fully adopting current photo-sharing solutions.