Children Living with Health Complexity (CLHC), whose multiple, severe and chronic conditions differentiate them from those with "complicated'' conditions, rely life-long on a vast and ever-shifting array of care providers. Their parent caregivers face a fragmented health care system, disconnected medical records, inter-stakeholder communication barriers and an impenetrable accumulation of documentation -- from mundane to life-critical, and largely on paper. They must coordinate care while organizing, tracking and transmitting trends in many health parameters to myriad care providers. We engaged with parent caregivers of CLHC from 12 families through an iterative, 3-phase co-design process to understand their needs for a future digital management system. We share our deepened understanding of their information-centered challenges, a set of principles for how design best-practices need to shift when targeting this acutely high-needs group, and a medium-fidelity prototype user interface which from the ground-up prioritizes caregiver-centered data integration and humanization of the child and family, as well as integrated health record access.
https://doi.org/10.1145/3544548.3581459
Chatbots have been designed to provide interventions in mental healthcare. However, how chatbot-based social contact can mitigate social stigma in mental illness remains under-explored. We designed two chatbots that deliver either first-person or third-person narratives about mental illness and evaluated them using a mixed methods study. Compared to a web survey group, participants in both chatbot groups decreased their beliefs that individuals are personally responsible for their mental illnesses, and increased their intentions to help. Additionally, participants in the first-person chatbot group showed a reduced level of fear, and a lower desire for social distance from people with mental illness. Many in the first-person chatbot group also reported a feeling of relationship with the chatbot, and chose to phrase their responses empathetically. Results demonstrated that chatbot-based social contact has promising potential for mitigating mental illness stigma. Implications for designing chatbot-based social contact are discussed.
https://doi.org/10.1145/3544548.3581384
Whilst the use of smart home systems has shown promise in recent years supporting older people's activities at home, there is more evidence needed to understand how these systems impact the type and the amount of shared care in the home. It is important to understand care recipients and caregivers' labour is changed with the introduction of a smart home system to efficiently and effectively support an increasingly aging population with technology. Five older households (8 participants) were interviewed before, immediately after and three months after receiving a Smart Home Health System (SHHS). We provide an identification and documentation of critical incidents and barriers that increased inter-household care work and prevented the SHHS from being successfully accepted within homes. Findings are framed within the growing body of work on smart homes for health and care, and we provide implications for designing future systems for shared home care needs.
https://doi.org/10.1145/3544548.3581546
CHI papers researching healthcare human-computer interaction (HCI) are increasingly reporting the use of "thematic analysis" (TA). TA refers to a range of flexible and evolving approaches for qualitative data analysis. Its increased use demonstrates a change in research practices, and with that the emergence of new local standards. We need to understand and reflect upon these emerging local practices, including departures from what is advocated as quality TA practice more generally. Toward this, we conducted a scoping review of a decade of CHI publications (2012 - 2021) that researched healthcare and termed their analysis approach "thematic analysis"; 78 papers reporting a total of 100 TAs were included. We contribute a description of 1) the contexts in which TA is being used, 2) the TA approaches being conducted, and 3) how TA is being reported. Drawing on this, we discuss opportunities to improve research practice when using TA in healthcare HCI.
https://doi.org/10.1145/3544548.3581203
We present a cross-cultural diary study with 64 transgender (trans) and non-binary adults in Mexico, the U.S., and India, to understand experiences keeping track of and managing aspects of personal health and well-being. Based on a reflexive thematic analysis of diary data, we highlight sociotechnical interactions that shape how trans and non-binary people track and manage aspects of their health and well-being. Specifically, we surface the ways in which trans and non-binary people infrastructure forms of care, by assembling together elements of informal social ecologies, formalized knowledge sources, and self-reflective media. We examine the forms of precarity that interact with care infrastructure and shape management of health and well-being, including management of gender identity transitions. We discuss the ways in which our findings extend knowledge at the intersection of technology and marginalized health needs, and conclude by arguing for the importance of a research agenda to move toward TGNB-inclusive design.
https://doi.org/10.1145/3544548.3581040
In the United States (U.S.), Black women in the perinatal period disproportionately experience higher rates of mental health challenges like anxiety and postpartum depression. Digital platforms present promising opportunities for mental health support. However, the extent to which these tools are being adopted and satisfying the mental health needs amongst perinatal Black women is underexplored. To address this gap, we surveyed 101 pregnant and postpartum Black women in the U.S. Despite prior work showing low utilization of mental health services amongst Black women, our results show more than half of our participants using specific digital tools for mental health support (e.g., mobile apps and social media). Importantly, use and satisfaction with these tools varied by subgroups (e.g., income and education level). We use our findings to present recommendations for digital mental health intervention research that incorporates an understanding of intersectional identities during the perinatal period.
https://doi.org/10.1145/3544548.3581475