Spirituality is an understudied topic in social computing; however, for Online Health Community (OHC) users facing life-threatening illness, it is of fundamental importance. Through in-depth focus groups with OHC stakeholders in a US context, we derive a definition of ``spiritual support'' for use by designers and researchers who study online social support. We show that spiritual support is an integral dimension that underlies all other social support types, and that if we ignore spirituality in design, we fail to mitigate problematic issues that arise in online spaces when users' spiritual values clash. Based on participants' ideations, we provide design implications for OHCs and other social media to better facilitate spiritual support through: (1) representing spiritual beliefs, (2) assistance with supportive communication, (3) support network visualization and mobilization, and (4) advance care planning and digital legacy.
https://doi.org/10.1145/3449117
While many technology-based approaches to support people living with HIV target specific clinical goals, recent work has begun to consider how to design support in the context of HIV stigma. Here, we consider two challenges; the first, and central challenge is how to work with a small group of stakeholders to design for the much larger, but hard to access, population of HIV positive individuals. Addressing the first challenge, we introduce the Narrative Tapestry design process, which is our main contribution, and helps create a generative third space wherein stakeholders draw on their cultural knowledge to reflect on common experiences of living with HIV. The second challenge is how to design a platform that is less likely to disintegrate as people transition through phases of living with a stigmatized identity. Applying the Narrative Tapestry process led us to insights that both demonstrate the value of the design process and partially address this second challenge. We find that social support can be a critical lifeline following an HIV diagnosis, but that when people have normalized their identity, this need can give way to a desire to address stigma directly. We propose combining social support tools with a set of features that enable people to work as change-agents to address stigma in their local communities. We argue that this type of platform would help to retain senior members who can serve both as community caretakers as well as role models for newcomers.
https://doi.org/10.1145/3479533
Online health communities (OHCs) have become important sources where members can obtain social support. Since most benefits of OHCs are provided by OHC members, it is crucial that OHCs maintain a critical mass of active members. This paper examines temporal changes in members' participation in a cancer-oriented OHC, focusing on the changes in members' motivations and behavior as they transition from newcomers to other roles or ultimately leave the community. Our work used mixed methods, combining behavioral log analysis, automated content analysis, surveys and interviews. We found that shifts in members' motivations seemed to be driven by two sources: the internal dynamics common to becoming a member of most online communities and the external needs associated with their cancer journey. When members' disease-driven needs for support decreased, most members quit the site. The motivations of those who stayed shifted from receiving support to providing it to others in the community. As in many online communities, oldtimers contributed the vast majority of content. However, they encountered challenges that threatened their commitment, including negative emotion related to other members' deaths, which led them to take leaves of absence from the community or to drop out permanently. Implications for the motivation changes of OHC members are discussed.
https://doi.org/10.1145/3449245
People often turn to online health communities (OHCs) for peer support on their specific medical conditions and health-related concerns. Over time, core members in OHCs build a shared understanding of the medical conditions they support. Although prior work has studied how individuals function differently in active sensemaking mode compared to habitual mode, little is known about how OHCs disseminate their advice once their core members operate primarily in habitual mode. We qualitatively observe one such OHC, `Surviving Antidepressants', to understand how collectively-built protocols are disseminated in the important domain of discontinuing psychiatric drugs. Psychiatric drugs are widely prescribed to treat mental health diagnoses, but, in certain cases, discontinuation might be clinically advisable. Unfortunately, some people experience severe withdrawal symptoms upon discontinuation, even when following medical advice, and thus turn to OHCs for support. We find that collectively-built protocols resemble medical advice and are delivered in a top-down fashion, with staff members being the primary source of informational support. In contrast, all members provide emotional support and exchange advice on navigating the medical system, while many express their distrust of the medical community and pharmaceutical companies. We also discuss the implications of OHCs offering advice outside of the medical system and offer suggestions for how OHCs can collaborate with healthcare providers to advance scientific knowledge and better support people living with medical conditions.
Although expressive writing has proved to be beneficial on physical, mental, and social health of individuals, it has been restrained to lab-based experimental studies. In the real world, individuals may naturally engage with expressive writing when dealing with difficult times, especially when facing a tough health journey. Health blogging may serve as an easy-to-access method for self-therapy, if spontaneous expressive writing occurs. However, many posts may not be expressive enough to provide the therapeutic power. In this study, we build a Gaussian naive Bayes model to detect expressive writing in an online health community, CaringBridge. Because we lack full text data as training data, we use a method to learn model parameters from meta-analysis of the literature. The classifier reaches reasonable accuracy on the test set annotated by the authors. We also explore factors that may influence users' spontaneous expressive writing. We find gender, health condition, author type, and privacy settings can affect individuals' spontaneous expressive writing. Finally, we reflect on our methodology and results and provide design implications for online health communities.
https://doi.org/10.1145/3449136
Chatbots systems, despite their popularity in today’s HCI and CSCW researches, fall short for one of the two reasons: 1) many of the systems use a rule-based dialog flow, thus they can only respond to a limited number of pre-defined user inputs with some scripted responses; or 2) they are designed with a focus on a single user scenario, and therefore little is known about these systems’ influence on other users in a community. In this paper, we present a research project that aims to develop a generalizable chatbot architecture to provide social support for community members in an online health community. The architecture is based on advanced neural network algorithms, thus it can handle new inputs from users and generate a variety of responses to them. The system is also generalizable as it can be easily migrate to other online communities. With a follow-up field experiment with the chatbot deployed back into the community, we illustrate the system’s usefulness in providing emotional supporting to individual members. In addition, our study provides empirical understandings to fill the research gap on how a social-support chatbot can positively impact the community engagement.
https://doi.org/10.1145/3449083
People living with Parkinson’s disease engage in self-tracking as part of their health self-management. Whilst health technologies designed for this group have primarily focused on improving the clinical assessments of the disease, less attention has been given to how people with Parkinson’s (PwP) use technology to track and manage their disease in their everyday life. We report on a qualitative study in which we systematically analysed posts from an online health community (OHC) comprising people with Parkinson’s. Our findings show that PwP track a diversity of information and use a wide range of digital and non-digital tools, informed by temporal and structured practices. Using an existing framework of sensemaking for chronic disease self-management, we also identify new ways in which people with Parkinson’s engage in sensemaking, alongside a set of new challenges that are particular to the character of this chronic disease. We relate our findings to technologies for self-tracking offering design implications.
https://doi.org/10.1145/3449158
Studies of personal informatics systems primarily examine people’s use or non-use, but people often leverage other technology towards their long-term behavior change processes such as social platforms. We explore how tracking technologies and social platforms together help people build healthy eating behaviors by interviewing 18 people who use Chinese food journaling apps. We contribute a Model of Socially Sustained Self-Tracking in personal informatics, building on the past model of Personal Informatics and the learning components of Social Cognitive Theory. The model illustrates how people get advice from social platforms on when and how to track, transfer data to and apply knowledge from social platforms, evolve to use social platforms after tracking, and occasionally resume using tracking tools. Observational learning and enactive learning are central to these processes, with social technologies helping people to gain deeper and more reliable domain knowledge. We discuss how lapsing and abandoning of tracking can be viewed as evolving to social platforms, offering recommendations for how technology can better facilitate this evolution.
https://doi.org/10.1145/3479595