Home care workers (HCWs) are increasingly central to post-acute and long-term health services in the United States. \update{Despite being a critical component of day-to-day care of home-dwelling adults, these workers often feel underappreciated and isolated on the job} and come from low-income and marginalized backgrounds. Leveraging the support of peers is one potential way to empower HCWs, but peer support encompasses a broad range of activities and aspects. Traditional conceptions of peer support may not be appropriate to the home care context, as HCWs are a distributed workforce who have few opportunities to interact with each other. In this study, we explore how HCWs value and conceptualize peer support. Our findings demonstrate the importance of peer support in performing the emotional labor of home care work and ongoing attempts to strategically frame the home care profession as essential and medical in nature. Our results ground design implications for technology-enabled peer support based on the power dynamics of our participants’ context and allow us to engage with issues where technology design for empowerment intersects with exploitation in distributed or crowd work, emotional labor, and tacit knowledge.
https://doi.org/10.1145/3476077
Previous works have shown that effective communication between parental caregivers and child patients has many benefits to the children, such as providing emotional support and coping skills for health management. Drawing on semi-structured interviews, we have identified the challenges parental caregivers face when communicating with their child about health-related information in daily illness management. Three salient challenges that the parental caregivers encountered include: (i) acknowledging different perceptions and approaches to being a cancer patient, (ii) choosing an appropriate communication method, and (iii) understanding their child’s uncommunicated emotions. Based on these challenges, we recognize distinctive, yet implicit, needs that children develop during the illness trajectory, affecting the parent-child dyadic relationship. We discuss design opportunities for a collaborative system that enhances the parent-child dyadic communication by supporting the child’s implicit and dynamically changing needs throughout the illness trajectory and beyond.
https://doi.org/10.1145/3449184
Care coordination involves crossing boundaries to connect services in support of the health and well-being of an individual. In this paper, we describe how care coordination depends on the ability to develop shared understanding of care goals and progress. A distributed group of professionals and non-professional caregivers need to share information to provide consistent and holistic support across settings. We conducted fieldwork comprising of 20 interviews and 51 hours of observation across three different programs focused on children’s behavioral health. From this empirical investigation of practices used by distributed care teams, we generated a conceptual framework of shared understanding in care coordination. We identified barriers to shared understanding, as well as nine practices that contribute to its development via two key mechanisms: (1) building relationships across boundaries, and (2) sharing actionable information. We conclude with design implications for enhancing the collaborative practices of members of a care team to cross boundaries despite the barriers that are common in behavioral health and other contexts requiring complex care coordination.
https://doi.org/10.1145/3449095
Family caregivers of patients with chronic conditions often subject themselves to drastic life changes. The quality of life of the caregivers often decreases noticeably at the beginning of the caregiving trajectory, because they typically reorient their lives to focus on the patient's health status. As a result, previous studies viewed caregivers primarily as people who need help and focused on how technologies can support them. However, in our study, we found that caregivers are also capable of developing their own experiential knowledge and strategies, which have been invisible in previous caregiver studies. By conducting in-home interviews with fourteen family caregivers, we present the types of new knowledge and coping strategies family caregivers have developed from their lived experiences during everyday caregiving tasks. These include 1) establishing new mindsets, 2) developing mindful activities, 3) building relationship management strategies, and 4) sharing experiences with people in their own networks. Based on our findings, we call for an asset-based approach that will help researchers notice the capabilities of caregivers. This approach could enable researchers to be more reflexive in the incorporation of caregivers' devalued knowledge within their system designs.
https://doi.org/10.1145/3479560
There are over three million people living with epilepsy in the U.S. People with epilepsy experience multiple daily challenges such as seizures, social isolation, social stigma, experience of physical and emotional symptoms, medication side effects, cognitive and memory deficits, care coordination difficulties, and risks of sudden unexpected death. In this work, we report findings collected from 3 focus groups of 11 people with epilepsy and caregivers and 10 follow-up questionnaires. We found that these participants feel that most people do not know how to deal with seizures. To improve others' abilities to respond safely and appropriately to someone having seizures, people with epilepsy and caregivers would like to share and educate the public about their epilepsy conditions, reduce common misconceptions about seizures and prevent associated stigma, and get first aid help from the public when needed. Considering social stigma, we propose design implications of future technologies for effective delivery of appropriate first aid care information to bystanders around individuals with epilepsy when they experience a seizure.
https://doi.org/10.1145/3449187
Health coaching can be an effective intervention to support self-management of chronic conditions like diabetes, but there are not enough coaching practitioners to scalably reach the growing population in need of support. Conversational technology, like chatbots, presents an opportunity to extend health coaching support to broader and more diverse populations. However, some have suggested that the human element is essential to health coaching and cannot be replicated with technology. In this research, we examine automated health coaching using a theory-grounded, wizard-of-oz chatbot, in comparison with text-based virtual coaching from human practitioners who start with the same protocol as the chatbot but have the freedom to embellish and adjust as needed. We found that even a scripted chatbot can create a coach-like experience for participants. While human coaches displayed advantages expressing empathy and using probing questions to tailor their support, they also encountered tremendous barriers and frustrations adapting to text-based virtual coaching. The chatbot coach had advantages in being persistent, as well as more consistently giving choices and options to foster client autonomy. We discuss implications for the design of virtual health coaching interventions.
https://doi.org/10.1145/3449173
An increasing number of people around the world are forced to leave their homes due to the climate catastrophe, regional conflict and poverty. In their new host countries however, refugees and migrants are frequently met by a wide range of challenges, including wider societal participation. The difficulties migrants and refugees face have also increasingly become the topic of HCI and CSCW work. In this paper we report on a three year-long project, involving refugees, migrants and activist supporters in a co-design project to develop tools that aid the process of resettling. Several aspects have challenged equal participation in the project, including divergent motives, unequal power distribution and cultural heterogeneity. Despite these challenges the project outcomes are in use and maintained beyond the project runtime through voluntary actors. We reflect on this discrepancy between process and outcome drawing on the concept of care.
https://doi.org/10.1145/3476050
The notion of "independence" is frequently used to motivate technology design in the HCI sub-field of accessible and assistive technology for people with disabilities. Despite the term's pervasive use, the literature lacks a recent articulation of its meaning in the context of assistive technology. What does independence really mean? Scoping the study to people with visual impairments (PVI), we posed this question to 10 individuals from diverse backgrounds through in-depth, semi-structured interviews. Our findings reveal that PVI have internal experiences of independence and social experiences of independence, with surprising insights into the roles that people and technology play in supporting independence. We also discuss new ways to design for independence.
https://doi.org/10.1145/3449223