Millions of Americans forego medical care due to a lack of non-emergency transportation, particularly minorities, older adults, and those who have disabilities or chronic conditions. Our study investigates the potential for using timebanks---community-based voluntary services that encourage exchanges of services for ``time dollars'' rather than money---in interventions to address healthcare transportation barriers to seed design implications for a future affordable ridesharing platform. In partnership with a timebank and a federally qualified healthcare center (FQHC), 30 participants completed activity packets and 29 of them attended online workshop sessions. Our findings suggest that promoting trust between drivers and riders requires systems that prioritize safety and reliability; yet, there were discrepancies in the ability of the timebank and FQHC to moderate trust. We also found that timebank supports reciprocity, but healthcare transportation requires additional support to ensure balanced reciprocity. We explain these findings drawing from network closure and trust literature. Finally, we contribute design implications for systems that promote trust and facilitate relational over transactional interactions, which help to promote reciprocity and reflect participants’ values.
https://dl.acm.org/doi/abs/10.1145/3491102.3502494
Although child participation is required for successful Type 1 Diabetes (T1D) management, it is challenging because the child’s young age and immaturity make it difficult to perform self-care. Thus, parental caregivers are expected to be heavily involved in their child’s everyday illness management. Our study aims to investigate how children and parents collaborate to manage T1D and examine how the children become more independent in their self-management through the support of their parents. Through semi-structured interviews with children with T1D and their parents (N=41), our study showed that children’s knowledge of illness management and motivation for self-care were crucial for their transition towards independence. Based on these two factors, we identified four types of children’s collaboration (i.e., dependent, resistant, eager, and independent) and parents' strategies for supporting their children’s independence. We suggest design implications for technologies to support collaborative care by improving children’s transition to independent illness management.
https://dl.acm.org/doi/abs/10.1145/3491102.3502055
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.
https://dl.acm.org/doi/abs/10.1145/3491102.3517544
We report on a Diary Study investigating daily practices of Self-care by seven UK adults living with Human Immunodeficiency Virus (HIV), to understand their routines, experiences, needs and concerns, informing Self-care technology design to support living well. We advance a developing HCI literature evidencing how digital tools for self-managing health do not meet the complex needs of those living with long-term conditions, especially those from marginalised communities. Our evaluation of using a Self-care Diary as Design Probe responds to calls to study Self-care practices so that future digital health tools are better grounded in lived experiences of managing multi-morbidity. We contribute to HCI discourses including Personal Health Informatics, Lived Informatics and Reflection by illuminating psychosocial challenges for practicing and self-reporting on Self-care. We offer design implications from a Critical Digital Health perspective, addressing barriers to technology use related to trust, privacy, and representation, gaining new significance during the COVID-19 pandemic.
https://dl.acm.org/doi/abs/10.1145/3491102.3501970
Adolescents in sub-Saharan Africa are at the epicenter of the global HIV epidemic. Yet, technology to support HIV management overwhelmingly focuses on adult medication adherence, neglecting the complex lives of adolescents in low-income regions. We present findings from interviews and focus groups that included twelve HIV-positive adolescents in Ethiopia, and eleven adults from their care circles. We leverage the Integrated Behavioral Model to examine the lived experience of HIV and the space for technology. Additionally, we present an inductive thematic analysis, which highlights non-disclosure as a central theme, i.e., adolescents remaining unaware of their HIV status. Drawing from these findings, we discuss how to account for (the lack of) disclosure in the design of technology to support HIV management, and reflect on whether technology could (and should) support the process. We further highlight the risks that researchers and designers need to be aware of when designing HIV management technology for this audience.
https://dl.acm.org/doi/abs/10.1145/3491102.3502132