Designing for Lived Health: Engaging the Sociotechnical Complexity of Care Work

As healthcare is increasingly shaped by everyday interaction with data and technologies, there is a widespread interest in creating information systems that help people actively participate in managing their own health and wellness. To date, personal health technologies are largely designed as large-scale “patient-centered” systems, grounded in a biomedical model of care and clinical processes and/or commercial “self-care” technologies, that seek to facilitate individual behavior change through activities like fitness tracking. Through investigating the lived experience of chronic illness—multiple, messy, and often the site of uncomfortable dependencies—my thesis empirically and theoretically engages the limitations of such popular design narratives to address sociotechnical complexities in personal health management. My findings, drawn from people’s care practices across three distinct field sites, argue for a need to contend with lived health: the ways in which everyday health and wellness activities are connected to wider ecologies of care that include the emotional labor of family and friends, entanglements of data, machineries and bodies, localized networks of resources and expertise, and contested forms of information work. My thesis contributes to the literature of Information and Computer Science in the fields of Human-Computer Interaction and Computer-Supported Cooperative Work by offering an alternative analytical lens for designing health systems that support a wider range of people’s social and emotional needs.PHDInformationUniversity of Michigan, Horace H. Rackham School of Graduate Studieshttps://deepblue.lib.umich.edu/bitstream/2027.42/146030/1/eskaziu_1.pd

Transition and Reflection in the Use of Health Information: The Case of Pediatric Bone Marrow Transplant Caregivers

ABSTRACT The impact of health information on caregivers is of increasing interest to HCI/CSCW in designing systems to support the social and emotional dimensions of managing health. Drawing on an interview study, as well as corroborating data including a multi-year ethnography, we detail the practices of caregivers (particularly parents) in a bone marrow transplant (BMT) center. We examine the interconnections between information and emotion work performed by caregivers through a liminal lens, highlighting the BMT experience as a time of transition and reflection in which caregivers must quickly adapt to the new social world of the hospital and learn to manage a wide range of patient needs. The transition from parent to 'caregiver' is challenging, placing additional emotional burdens on the intensive information work for managing BMT. As a time of reflection, the BMT experience also provides an occasion for generative thinking and alternative approaches to health management. Our study findings call for health systems that reflect a design paradigm focused on 'transforming lives' rather than 'transferring information.' Autho

The future of care work: towards a radical politics of care in CSCW research and practice

Computer-Supported Cooperative Work (CSCW) and Human- Computer Interaction (HCI) have long studied how technology can support material and relational aspects of care work, typically in clinical healthcare settings. More recently, we see increasing recognition of care work such as informal healthcare provision, child and elderly care, organizing and advocacy, domestic work, and service work. However, the COVID-19 pandemic has underscored long-present tensions between the deep necessity and simultaneous devaluation of our care infrastructures. This highlights the need to attend to the broader social, political, and economic systems that shape care work and the emerging technologies being used in care work. This leads us to ask several critical questions: What counts as care work and why? How is care work (de)valued, (un)supported, or coerced under capitalism and to what end? What narratives drive the push for technology in care work and whom does it benefit? How does care work resist or build resilience against and within oppressive systems? And how can we as researchers advocate for and with care and caregivers? In this one-day workshop, we will bring together researchers from academia, industry, and community-based organizations to reflect on these questions and extend conversations on the future of technology for care work

The Care Work of Access

Current approaches to AI and Assistive Technology (AT) often foreground task completion over other encounters such as expressions of care. Our paper challenges and complements such task-completion approaches by attending to the care work of access—the continual affective and emotional adjustments that people make by noticing and attending to one another. We explore how this work impacts encounters among people with and without vision impairments who complete tasks together. We find that bound up in attempts to get things done are concerns for one another and how well people are doing together. Reading this work through emerging disability studies and feminist STS scholarship, we account for two important forms of work that give rise to access: (1) mundane attunements and (2) noninnocent authorizations. Together these processes work as sensitizing concepts to help HCI scholars account for the ways that intelligent ATs both produce access while sometimes subverting people with disabilities

Collaborative Technologies for Children with Special Needs: A Systematic Literature Review

This paper presents a systematic literature review on collaborative technologies for children with special needs in ACM Digital Library. The aim of the review is to (1) reveal the current state of the art, (2) identify the types of technologies and contexts of use, the demographics and special needs of the target group, and the methodological approaches and theoretical groundings, and (3) define a future research agenda. The results of the systematic literature review show that collaborative technologies for children with special needs are increasingly gaining attention, mostly involve tangible and/or embodied interaction, and are often developed for use in the classroom. The target group that is most represented are boys between 6 to 12 years with Autism Spectrum Disorder. The results further show a wide range of evaluation criteria for measuring collaboration, an interchanging use of theoretical concepts and a lack of definitions for the concept collaboration, and a need for more demographically diverse studies