Publications list
Journal article
"We are half-doctors": Family Caregivers as Boundary Actors in Chronic Disease Management
Published 16 Apr 2023
Proceedings of the ACM on human-computer interaction, 7, CSCW1, 1 - 29
Computer-Supported Cooperative Work (CSCW) and Human--Computer Interaction (HCI) research is increasingly investigating the roles of caregivers as ancillary stakeholders in patient-centered care. Our research extends this body of work to identify caregivers as key decision-makers and boundary actors in mobilizing and managing care. We draw on qualitative data collected via 20 semi-structured interviews to examine caregiving responsibilities in physical and remote care interactions within households in urban India. Our findings demonstrate the crucial intermediating roles family caregivers take on while situated along the boundaries separating healthcare professionals, patients and other household members, and online/offline communities. We propose design recommendations for supporting caregivers in intermediating patient-centered care, such as through training content and expert feedback mechanisms for remote care, collaborative tracking mechanisms integrating patient- and caregiver-generated health data, and caregiving-centered online health communities. We conclude by arguing for recognizing caregivers as critical stakeholders in patient-centered care who might constitute technologically assisted pathways to care.
Journal article
Infrastructuring Telehealth in (In)Formal Patient-Doctor Contexts
Published 18 Oct 2021
Proceedings of the ACM on human-computer interaction, 5, CSCW2, 1 - 28
Telehealth technologies have long remained on the peripheries of healthcare systems that prioritize in-person healthcare provision. The spread of the COVID-19 pandemic has foregrounded the need to formalize telehealth infrastructures, particularly teleconsultations, to ensure continued care provision through remote mechanisms. In the Indian healthcare context, prior to the pandemic, teleconsultations have been used to substitute for in-person consultations when possible, and to facilitate remote follow-up care without exacerbating pressures on limited personal resources. We conducted a survey and interview study to investigate doctors' and patients' perceptions, experiences, and expectations around teleconsultations, and how these contribute towards supplementing healthcare infrastructures in India, focusing on the changes brought about by the COVID-19 pandemic. In this paper, we describe the efforts of our participants towards infrastructuring telehealth, examining how technologies were adapted to support teleconsultation, how expectations shifted, and how the dynamics of caregiving evolved through this transition. We present implications for the future design and uptake of telehealth, arguing that COVID-19's impact on teleconsultations lays the foundation for new telehealth infrastructures for more inclusive and equitable care.
Journal article
Published 22 Apr 2021
Proceedings of the ACM on human-computer interaction, 5, CSCW1, 1 - 24
Older adults are especially vulnerable to online cybersecurity and privacy (SP) threats, such as phishing, ransomware, and targeted misinformation campaigns. Prior work has suggested that this vulnerability may be addressed with the design of social SP interfaces, such that groups of individuals might work together on behalf of one another to manage SP threats collectively. To this end, we present findings from a qualitative inquiry conducted with older adults and members of technology-rich middle-income households in urban India, where technology users have been shown to engage in relatively more social SP practices. Our research examines the collaborative behaviors enacted by different members of the household for protection from SP threats. In particular, we show how self-appointed family technology managers straddle the line between stewardship and paternalism in their efforts to protect older adults from perceived digital threats. We also offer design implications for supporting collaborative cybersecurity within households based on the insights derived from our analysis.
Journal article
Sociocultural Dimensions of Tracking Health and Taking Care
Published 14 Oct 2020
Proceedings of the ACM on human-computer interaction, 4, CSCW2, 1 - 24
The field of personal health informatics has received increasing attention within the CSCW and HCI communities as health tracking becomes more affordable, accessible, and pervasive. Chronic disease management, in particular, presents tremendous potential for intervention given patients' ability to now actively participate in their care through tracking. The focus on 'personal' in health informatics, however, obfuscates the role of other cultural and ecological factors that might shape health tracking behaviors, and important information from alternative sources could be ignored by virtue of being subjective, complex, or simply hard to collect. To dig deeper into these negative spaces that may go untracked, uncover potential sources of important health information, and more completely understand current tracking practices, we embarked on an interview study with patients with cardiac diseases in Bangalore, India. In this paper, we present these patients' current health management approaches that are culturally situated, identifying both motivations and barriers to tracking, their attitudes towards online information, as well as cultural and ecological influences on their perceptions of cardiac care. We then discuss the interplay between our findings and current notions of, and approaches towards, patient empowerment and datafication of health.
Journal article
Published 02 Jan 2020
CoDesign, 16, 1, 29 - 44
Participatory design has as both its purpose and means, the democratic engagement and empowerment of end-users in design processes. The situation of participatory design, as a unit of analysis, is however, laden with complex power dynamics and interactions amongst participating actants; this contributes to advancing as well as inhibiting both the employment of the means and the achievement of the goals of democratic engagement and empowerment. This paper presents the case of participatory design with a community-based organisation, in the design of technology artefacts for one of their service centres. Using Situational Analysis, a critical qualitative inquiry methodology, the paper unpacks the complex interactions and surfaces the hidden power mechanisms and hegemonic dynamics in the participatory design situation. Further, on the premise that reflection and reflexivity can facilitate critical review, empowerment of users, and self-development in design teams, the paper presents an analysis of the extent to which reflexivity was achieved in the participatory design sessions, and discusses the mechanisms that were employed in this situation to mitigate the identified barriers against democratic engagement and empowerment.