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BackgroundAlthough family caregivers play a critical role in care delivery, research has shown that they face significant physical, emotional, and informational challenges. One promising avenue to address some of caregivers’ unmet needs is via the design of digital technologies that support caregivers’ complex portfolio of responsibilities. Augmented reality (AR) applications, specifically, offer new affordances to aid caregivers as they perform care tasks in the home. ObjectiveThis study explored how AR might assist family caregivers with the delivery of home-based cancer care. The specific objectives were to shed light on challenges caregivers face where AR might help, investigate opportunities for AR to support caregivers, and understand the risks of AR exacerbating caregiver burdens. MethodsWe conducted a qualitative video elicitation study with clinicians and caregivers. We created 3 video elicitations that offer ways in which AR might support caregivers as they perform often high-stakes, unfamiliar, and anxiety-inducing tasks in postsurgical cancer care: wound care, drain care, and rehabilitative exercise. The elicitations show functional AR applications built using Unity Technologies software and Microsoft Hololens2. Using elicitations enabled us to avoid rediscovering known usability issues with current AR technologies, allowing us to focus on high-level, substantive feedback on potential future roles for AR in caregiving. Moreover, it enabled nonintrusive exploration of the inherently sensitive in-home cancer care context. ResultsWe recruited 22 participants for our study: 15 clinicians (eg, oncologists and nurses) and 7 family caregivers. Our findings shed light on clinicians’ and caregivers’ perceptions of current information and communication challenges caregivers face as they perform important physical care tasks as part of cancer treatment plans. Most significant was the need to provide better and ongoing support for execution of caregiving tasks in situ, when and where the tasks need to be performed. Such support needs to be tailored to the specific needs of the patient, to the stress-impaired capacities of the caregiver, and to the time-constrained communication availability of clinicians. We uncover opportunities for AR technologies to potentially increase caregiver confidence and reduce anxiety by supporting the capture and review of images and videos and by improving communication with clinicians. However, our findings also suggest ways in which, if not deployed carefully, AR technologies might exacerbate caregivers’ already significant burdens. ConclusionsThese findings can inform both the design of future AR devices, software, and applications and the design of caregiver support interventions based on already available technology and processes. Our study suggests that AR technologies and the affordances they provide (eg, tailored support, enhanced monitoring and task accuracy, and improved communications) should be considered as a part of an integrated care journey involving multiple stakeholders, changing information needs, and different communication channels that blend in-person and internet-based synchronous and asynchronous care, illness, and recovery.more » « less
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Abstract ObjectiveTo understand the perspectives of home health aides (HHAs) toward their own health and health behaviors, and how their job impacts both. Data Sources and Study SettingInterviews were conducted with 28 HHAs from 16 unique home care agencies from August 2021 to January 2022. The study was conducted in partnership with the 1199SEIU Training and Employment Fund, a labor‐management fund of the largest health care union in the US. Study DesignA qualitative study with English and Spanish‐speaking HHAs. Interviews were conducted using a semi‐structured topic guide, informed by Pender's Health Promotion Model and the National Institute for Occupational Safety and Health's Total Worker Health Model. To be eligible, HHAs had to be currently employed by a home care agency in New York, NY. Data Collection/Extraction MethodsInterviews were recorded, professionally transcribed, and analyzed thematically. Principal FindingsThe 28 HHAs had a mean age of 47.6 years (SD 11.1), 39% were non‐Hispanic Black, 43% were Hispanic, and they had a mean of 14.1 years (SD 7.8) of job experience. Five themes emerged; HHAs were: (1) Healthy enough to work, but were managing their own chronic conditions while working; (2) Motivated to be healthy, in part driven by their desire to care for others; (3) Worked closely with sick patients, which influenced their perceptions of health; (4) Experienced occupational and patient‐level barriers to practicing healthy behaviors; (5) Sought support and resources to improve their health and wellbeing. ConclusionsHHAs have numerous health challenges, many of which are influenced by their job. Culturally and occupationally tailored interventions may mitigate the barriers that HHAs experience to achieve optimal health.more » « less
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Home care workers (HCWs) are professionals who provide care to older adults and people with disabilities at home. However, HCWs are vulnerable and especially susceptible to wage theft, or not being paid their legally-entitled wages in full by their employers. Prior work has examined other low-wage work settings to show how technology is designed and deployed has the potential to both cause and address wage theft. We extend this work by examining the relationship between technology and wage theft in the home care context. We collaborated closely with a local grassroots organization to conduct interviews with workers and labor, legal, and payroll experts. We uncovered how the complex, volatile, and diverse nature of home care complicates the errors in time-tracking systems. Through design provocations and focus groups with workers and experts, we also investigated the potential of technology as a part of broader efforts to curb wage theft through educating and empowering isolated HCWs. While we found that approachable design could reduce errors in existing systems, make employer processes more transparent, and help workers exchange knowledge to build collective power, we also discuss concerns around burden, privacy, and accountability when designing technologies for HCWs and other low-wage workers.more » « less
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Home care workers (HCWs) provide essential care in patients' homes but are often underappreciated and work in stressful and isolated environments with diverse and intersecting support needs. This paper describes a computer-mediated peer support program that centers around sharing circles: spaces for personal, narrative storytelling to encourage HCWs to collaboratively reflect on their home care experiences and build rapport and shared identity with their peers. We describe the design of this program and a 12-week deployment that we conducted to evaluate the program with 42 HCWs in New York City. Our findings show that participants engaged in multiple types of peer support including emotional validation, learning how to navigate the workplace and patient care, defining and enabling good home care praxis, and building understanding around purpose and identity as HCWs. We discuss how these findings inform the design of technology and use of holistic pedagogies, such as storytelling, to enable this support in computer-mediated peer support programs. Such programs can help researchers and practitioners interested in addressing diverse needs that occur in intersectional contexts, such as that of HCWs and other marginalized populations.more » « less
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Home health aides are paid professionals who provide long-term care to an expanding population of adults who need it. However, aides' work is often unrecognized by the broader caregiving team despite being in demand and crucial to care---an invisibility reinforced by ill-suited technological tools. In order to understand the invisible work aides perform and its relationship to technology design, we interviewed 13 aides employed by home care agencies in New York City. These aides shared examples that demonstrated the intertwined nature of both types of invisible work (i.e., emotions- and systems-based) and expanded the sociological mechanisms of invisibility (i.e., sociocultural, sociolegal, sociospatial) to include the sociotechnical. Through these findings, we investigate the opportunities, tensions, and challenges that could inform the design of tools created for these important, but often overlooked, frontline caregivers.more » « less
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This study examines the unique challenges facing rural home care workers. Semi-structured interviews were undertaken between July 2021 and February 2022 with 23 participants that have experience in rural home care delivery. The major challenge confronting rural home care workers involved distance and transportation. This challenge emerged due to long distance between clients, unreliable vehicles, inadequate reimbursement, and inclement weather. In turn, this challenge exacerbated three other types of challenges facing rural home care workers: workforce challenges that consisted of a persistent labor shortage and shorter visits that forced workers to rush through tasks, client isolation due to the social and physical seclusion of households, and the poor working conditions of home care work more broadly. Without policy interventions that respond to these particular challenges, the care gap in rural areas can be expected to grow.more » « less
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