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Isolation in Coordination: Challenges of Caregivers in the USA
... Finally, our review found that a common use of ICTs was for facilitating respite care coordination. Other researchers have also argued that ICTs can be used to support family caregiving by facilitating the coordination of caregiving support services [39,41]. Coordination support for home care nursing include easy SMS text messaging or calling members of the care team, as well as storing information on the care receiver's health care status and caregiving support needs. ...
... Design considerations for respite care ICTs identified in this study emphasized the need for trust, as well as the need for participatory design methods. Without trust in the respite care services, providers, and ICT platforms, family caregivers will not use the available resources [4,41,42]. In a recent scoping review on the challenges of using ICTs to support family caregiving, Hassan [43] concluded that facilitating trust in ICT was an important factor for successful ICT deployment. ...
... Furthermore, only 1 program discussed care receivers as the participants or end users. For respite care ICT research to be truly user-centered in the designs and implementations, the perspectives of patients and care receivers should be included, as well [41,43,47,48]. ...
Background:
Respite care is one of the most frequently requested support services by family caregivers. Yet, too often, respite care services are inaccessible, due in part to families' lack of knowledge regarding available services and a lack of service flexibility. Information and communication technologies (ICTs) may help to improve the flexibility of services available and families' knowledge of such services. However, an understanding of the use of ICTs and research in this area is lacking.
Objective:
The objective of this study was to provide a comprehensive overview of the academic literature on ICTs for supporting the provision of respite care services.
Methods:
A scoping review study was conducted. Six library databases were systematically searched for relevant literature. Key data were extracted into a summary chart. Text and quantitative data were coded using descriptive qualitative content analysis techniques, and the results were collated and summarized into a comprehensive narrative.
Results:
A total of 23 papers describing 15 unique ICT programs exploring the potential of ICTs to support respite care services met the inclusion criteria. ICTs supported the provision of respite care by facilitating information-sharing with families and providers, recruiting and training respite care providers, and coordinating services. Key design considerations for developing respite care ICTs were trustworthiness and participatory design methods. Implementation considerations included designing for complementarity with existing services, assessing the appropriate timing for introducing the ICT-based services, and ensuring adequate promotion strategies to raise awareness about the services.
Conclusions:
There is limited but promising research on the potential of ICTs to support the provision of respite care services. Further research should be conducted to advance the results of this review, ultimately aiming to build ICTs that can improve the quality of, and access to, respite care services.
... Primary caregivers not only bear the greatest burden of care work but also lead the articulation work (Tang et al., 2018). Typical challenges in this context include communication breakdowns, lack of transparency in the tasks and roles of actors in the care network, scheduling and temporal alignment of activities, coordination of handoffs, balance and fairness in task management, reconciliation of caregiving with work and life, trust building, easing of tensions among caregivers and dynamic changes in usual care arrangements (Schurgin et al., 2021;Tang et al., 2018;Renyi et al., 2017;Renyi et al., 2018;Renyi et al., 2019). ...
... Within the field of CSCW, numerous studies have addressed the role of infrastructures and infrastructuring work in (informal) care coordination, including in the context of medication (Bossen and Markussen, 2010;Danholt and Langstrup, 2012), chronic care (Langstrup, 2013), childcare (Gui and Chen, 2019), elder care (Schurgin et al., 2021) and mental health (Kaziunas et al., 2019). For example, Bossen and Markussen (2010) studied infrastructural breakdown during the upgrade of a medication module of a hospital information system, which revealed the module's role as an "ordering device" to facilitate and enable cooperative work. ...
... Actors do not always share common ground. They are divided by financial, spatial, or social inequalities (Schurgin et al., 2021;Franke et al., 2019;Kaziunas et al., 2019), which may lead to diverse role expectations and value for each other. Some actors may disdain the work of others. ...
In homecare, networks are formed by professional, semiprofessional, and informal actors, who collaborate to care for people in need. Modern information and communication technology (ICT) might play an important role to enhance cooperation in homecare networks. Through infrastructuring work, the authors seek to build a comprehensive understanding of the types of collaboration complexity in homecare networks to determine if, when and which technologies are most suitable. This paper examines how homecare networks can be classified according to collaboration complexity. A four-stage research design was followed to develop a taxonomy for homecare collaboration. The taxonomy was applied to 21 care networks, and five types of homecare networks were identified. The taxonomy considers network, tasks, and communication particularities across 13 dimensions, each of which includes three characteristics. Three clusters were identified as more likely than the others to benefit from increased technology use. The taxonomy and archetypes highlight which homecare network types could benefit from increased technology use. Additionally, the taxonomy allows for an iterative re-evaluation of networks to initiate measures for improvement.
... Beyond values, the literature also describes the work of caregivers in managing care. This can be described as articulation work, where caregivers are clarifying and coordination information [59,66], sending out information [17,18], and acting as intermediaries and "boundary actors" [5,59] for managing care with other events and people. ...
... Beyond values, the literature also describes the work of caregivers in managing care. This can be described as articulation work, where caregivers are clarifying and coordination information [59,66], sending out information [17,18], and acting as intermediaries and "boundary actors" [5,59] for managing care with other events and people. ...
In serious illness contexts, caregivers tasked with making decisions for incapacitated patients face unique challenges. Current tools for values elicitation, primarily patient-oriented, may not fully meet caregiver needs. This study, involving 12 caregivers, adopted a research-through-design approach to evaluate caregiver-facing values elicitation tools. The findings reveal caregivers' need for more support in understanding their own values, discerning patient values, and reconciling these perspectives. While caregivers seek tools for consensus building within the family, they prefer using them individually rather than in a shared manner. The study also highlights a general unawareness of the importance of values in decision-making. This lack of understanding points to the need for tools that educate as well as aid in decision-making. Finally, tool designers must balance top-down directives with bottom-up values in their designs. This research informs the development of more effective caregiver-facing values elicitation tools.
... Community nurses are pivotal in supporting and educating caregivers, visiting them and their loved ones at home, as well as providing a point of contact when issues arise. Caregivers need regular interaction with health professionals who can help them manage care challenges as they arise (e.g., clarifying medication regimes and chronic illness care, help navigating technology to get information) (Schurgin et al., 2021). Nurses in hospital and community settings can assist caregivers by providing information on the various resources that are available to them in their local communities or online. ...
... Time management takes many forms that may include balancing work, family, and caregiving responsibilities, the management of transport to and from medical appointments, and assisting in medication or therapeutic regimes [43]. In this study, the topic of time burden crosses several topic areas and is specifically noted in topic 4, where the emotional toll of time commitments in caring for a family member is explicitly discussed. ...
Almost 40% of US adults provide informal caregiving, yet research gaps remain around what burdens affect informal caregivers. This study uses a novel social media site, Reddit, to mine and better understand what online communities focus on as their caregiving burdens. These forums were accessed using an application programming interface, a machine learning classifier was developed to remove low information posts, and topic modeling was applied to the corpus. An expert panel summarized the forums’ themes into ten categories. The largest theme extracted from Reddit’s forums discussed the personal emotional toll of being a caregiver. This was followed by logistic issues while caregiving and caring for parents who have cancer. Smaller themes included approaches to end-of-life care, physical equipment needs when caregiving, and the use of wearables or technology to help monitor care recipients. The platform often discusses caregiving for parents which may reflect the age of Reddit’s users. This study confirms that Reddit forums are used for caregivers to discuss the burdens associated with their role and the types of stress that can result from informal caregiving.
... Although these supports originate from distinct service sectors (e.g., health, social, education, employment, financial), there is often no accompanying individual or agency available to assist caregivers with the attendant coordination requirements. Indeed, caregivers report the extraordinary amount of time and energy spent to coordinate their child's services, difficulty in obtaining information, and confusion around how best to 'navigate' amongst programs' diverse access and eligibility criteria as burdensome and isolating [7]. ...
Patient navigation (PN) represents a branch of service delivery traditionally aimed at coordinating disjointed care services for patients with particular health conditions (e.g., cancer, HIV, diabetes). Over time, this approach has been extended to various social and health contexts, including most recently to children with neurodisability and their families. In this context, PN involves the provision of information, advice, education, and emotional support, coordination of services both within and across sectors, and the work is guided by person- and family-centred principles of practice. This manuscript documents the proceedings of the BC Summit on Navigation for Children and Youth with Neurodevelopmental Differences, Disabilities, and Special Needs , which took place on January 18 and 19, 2021 and was developed in collaboration with a Provincial Advisory Group. Our Summit brought together over 120 individuals, including researchers, government personnel, service providers, educators, healthcare workers, and family advocates. As part of the event, attendees learned from families with lived experience navigating the British Columbian (BC) service system, from BC Children’s Hospital Research Institute investigators, and from exemplar providers who deliver navigation services in various contexts (e.g., locally, regionally, and provincially). Attendees also participated in various engagement opportunities, and collaboratively identified directions for developing a future community of navigation and related services in BC.
... There are many examples of HCI research on complex care, including many from just the past few years. These include Guan et al. [21], who advocated designing for people with dementia and caregivers with their access to community care ecosystems in mind; Pendse et al. [34], who showed how helplines for mental health support can fail to account for people's marginalized identities and thwart their attempts to access care; Schurgin et al. [36], who identified coordination challenges for caregivers due to relationships, access to resources, and physical and mental barriers; and Chopra et al. [12], who illustrated how people with Polycystic Ovary Syndrome experienced stigma and uncertainty, shaping understanding of their condition and how they sought support. ...
... Integrating feedback from a variety of stakeholders meets the needs of more communities [39], particularly in highstake scenarios such as healthcare [61]. For this work, we created a team with multi-disciplinary expertise ranging from Healthcare, ML for Health, ML Fairness, Applied Ethics and Human-Centered Design. ...
Machine learning (ML) approaches have demonstrated promising results in a wide range of healthcare applications. Data plays a crucial role in developing ML-based healthcare systems that directly affect people's lives. Many of the ethical issues surrounding the use of ML in healthcare stem from structural inequalities underlying the way we collect, use, and handle data. Developing guidelines to improve documentation practices regarding the creation, use, and maintenance of ML healthcare datasets is therefore of critical importance. In this work, we introduce Healthsheet, a contextualized adaptation of the original datasheet questionnaire ~\cite{gebru2018datasheets} for health-specific applications. Through a series of semi-structured interviews, we adapt the datasheets for healthcare data documentation. As part of the Healthsheet development process and to understand the obstacles researchers face in creating datasheets, we worked with three publicly-available healthcare datasets as our case studies, each with different types of structured data: Electronic health Records (EHR), clinical trial study data, and smartphone-based performance outcome measures. Our findings from the interviewee study and case studies show 1) that datasheets should be contextualized for healthcare, 2) that despite incentives to adopt accountability practices such as datasheets, there is a lack of consistency in the broader use of these practices 3) how the ML for health community views datasheets and particularly \textit{Healthsheets} as diagnostic tool to surface the limitations and strength of datasets and 4) the relative importance of different fields in the datasheet to healthcare concerns.
The CSCW and HCI community has increasingly examined ways to support informal caregivers through technology, given the increasing burden and its consequences on caregivers' emotional and physical health. In this paper, we interviewed 12 informal caregivers of Persons Living With Dementia (PLWD) to understand their needs and current coping strategies for overcoming caregiving burden, specifically around emotion work. The caregivers associated different personal meanings with caregiving. Participants wanted technology to take over some of the utilitarian, mundane caregiving tasks. At the same time, they did not want technology to take over the tasks that fostered personal connections with PLWD. As the disease progressed, caregivers started to lose their perceived bond with PLWD, making it more challenging to juggle between rewarding, positive emotions with negative experiences. We discuss such complexity of emotion work using the notion of Invisible Work to understand when technology should or should not support the emotion work engaged in informal caregiving.
The past several decades have seen significant advances in monitoring older adults' health and well-being. However, creating viable, practical monitoring systems for informing caregivers requires understanding which behaviors and signs to track and what approaches best present that information. To investigate how technology can be leveraged to better augment caregivers' workflows, we take a multi-stage, qualitative approach to gain insights into the needs of caregivers and the older adults receiving care. Specifically, we use a series of domain expert interviews, cognitive walkthroughs, and semi-structured interviews with residents, and we synthesize our takeaways using thematic analysis at each phase. Our results show that this type of monitoring technology has great potential to reduce the effort needed by caregivers to complete their responsibilities and communicate with their teams. Additionally, we found that older adults are receptive to the technology but their privacy and autonomy must be prioritized for the sake of their mental wellbeing. These insights will facilitate greater intelligent interface development for Person-Centered Care by identifying important design considerations and vital features that require system support.
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.
When a child is hospitalized with a serious illness, their family members must process emotional stress, quickly absorb complicated clinical information, and take on new caregiving tasks. They also have to coordinate with each other and with other family caregivers without abandoning existing work and home life responsibilities. Previous CSCW and HCI research has shown how the patient's experience changes across the illness journey, but less is known about the effect of this journey on family caregivers and their coordination work. CSCW technologies could support and augment family care coordination work across the journey, reducing stress levels and improving families' ability to stay connected and informed. In this paper, we report findings from an interview study we conducted with 14 parents of children undergoing extended hospitalization for cancer treatment. We propose the concept of caregiving coordination journeys and describe caregivers' current communication and coordination practices across different phases of the hospitalization journey, from diagnosis and early hospitalization to extended hospitalization and beyond. We characterize families' caregiving coordination routines across different time scales, and describe the current role of communication technologies in families' coordination practices. We then propose design opportunities for social computing technologies to support and augment families' communication and caregiving work during the hospitalization journey of their child.
Dementia is a major public health concern, and mobile technologies have been identified as having the potential to improve the quality of life for individuals with dementia and their caregivers. Recent research, however, suggests that technology-based solutions are frequently driven by and beneficial to caregivers, not both. Emerging personal technologies that are equipped with self-tracking are an ideal option for accommodating person-centered care in light of the collaborative nature of dementia care. However, there is a lack of investigation on how tracking occurs in the context of dementia care. This article presents a thematic analysis of the types of tracking-related information desired in dementia care online communities, as well as how and by whom they are desired through adapting the Conceptual Model of Shared Health Informatics (CoMSHI) for tracking in chronic illness management. Our findings show that four types of tracking metrics are desired for nine types of information: safety alert for wandering, falls, and strangers, reminders of daily life activities and medical and health related activities, monitoring data related to daily life activities and data related to health status, and remote control for patients' daily life activities and financial safety. Family members, caregivers, community members, and persons with dementia involved in work with tracked data face specific challenges. We recommend that self-tracking technologies be implemented in dementia care through collaboration, with the recognition of different types of information as well as different roles involved and with particular attention paid to different types of data work and related roles in data work.
Parents and their school-age children can impact one another's sleep. Most sleep-tracking tools, however, are designed for adults and make it difficult for parents and children to track together. To examine how to design a family-centered sleep tracking tool, we designed DreamCatcher. DreamCatcher is an in-home, interactive, shared display that aggregates data from wrist-worn sleep sensors and self-reported mood. We deployed DreamCatcher as a probe to examine the design space of tracking sleep as a family. Ten families participated in the study probe between 15 and 50 days. This study uses a family systems perspective to explore research questions regarding the feasibility of children actively tracking health data alongside their parents and the effects of tracking and sharing on family dynamics. Our results indicate that children can be active tracking contributors and that having parents and children track together encourages turn-taking and working together. However, there were also moments when family members, in particular parents, felt discomfort from sharing their sleep and mood with other family members. Our research contributes to a growing understanding of designing family centered health-informatics tools to support the combined needs of parents and children.
Adolescents with chronic conditions must work with family caregivers to manage their illness experiences. To explore how technology can support collaborative documentation of these experiences, we designed and distributed a diary probe kit in a two-week field deployment with 12 adolescent-parent dyads (24 participants). Three insights emerged from the study that highlight how technology can support shared illness management: 1) provide scaffolds to recognize physical and emotional experiences in the context of daily activities; 2) help families reconstruct patient experiences; and 3) adapt to individual preferences for capturing, representing and sharing experiences. We discuss opportunities for HCI research that follow from these findings and conclude by reflecting on the benefits and limitations of using diary probes with adolescent patients and their parental caregivers.
Community + Culture features practitioner perspectives on designing technologies for and with communities. We highlight compelling projects and provocative points of view that speak to both community technology practice and the interaction design field as a whole. --- Sheena Erete, Editor
Many healthcare systems around the world are noted as fragmented, complex and low-quality, leaving patients and caregivers with no choice but to engage in "infrastructuring work" to make it function for them. However, the work patients do to construct their functioning health service systems often remain invisible, with very little resources and technologies available to assist them. This workshop aims to bring together researchers, health practitioners, and patients to examine, discuss, and brainstorm ways to re-envision our healthcare service systems from the perspective of patients and caregivers. We aim to unpack the types of work that patients and caregivers do to reconfigure, reconstruct and adapt the healthcare infrastructure, and to brainstorm design solutions that can provide better infrastructuring assistance to them.
The U.S. healthcare infrastructure is fragmented with various breakdowns. Patients or caregivers have to rely on their own to overcome barriers and fix breakdowns in order to obtain necessary service, that is, infrastructuring work to make the healthcare infrastructure work for them. So far little attention has been paid to such infrastructuring work in healthcare. We present an interview study of 32 U.S. parents of young children to discuss the work of infrastructuring our participants carry out to deal with breakdowns within the healthcare infrastructure. We report how they repaired unexpected failures happening at the individual level, aligned components at organizational and cross-organizational level, and circumvented infrastructural constraints (e.g., policy and financial ones) that were perceived as ambiguous and demanding. We discuss infrastructuring work in light of the literature on patients' and caregivers' work, reflect upon the notion of patient engagement, and explore nuances along several dimensions of infrastructuring work. CCS Concepts • Human-centered computing → Human computer interaction (HCI); Empirical studies in HCI
Teens with complex chronic illnesses have difficulty understanding and articulating symptoms such as pain and emotional distress. Yet, symptom communication plays a central role in clinical care and illness management. To understand how design can help overcome these challenges, we created a visual library of 72 sketched illustrations, informed by the Observations of Daily Living framework along with insights from 11 clinician interviews. We utilized our library with storyboarding techniques, free-form sketching, and interviews, in co-design sessions with 13 pairs of chronically-ill teens and their parents. We found that teens depicted symptoms as being interwoven with narratives of personal and social identity. Teens and parents were enthusiastic about collaboratively-generated, interactive storyboards as a tracking and communication mechanism, and suggested three ways in which they could aid in communication and coordination with informal and formal caregivers. In this paper, we detail these findings, to guide the design of tools for symptom-tracking and incorporation of patient-generated data into pediatric care.
The paper reports from a homecare fieldwork and discusses the various types of work carried out by homecare workers. We describe formal guidelines for quality in homecare services as a background for looking deeper into the homecare practices and using them as a basis for discussing what high quality homecare is. We have identified seven types of homecare work needed in homecare: illness work, everyday life work, life-changing work, relation work, discretion work, information work and articulation work and we discuss quality in each of these as well as in the homecare as a whole. We exemplify how the quality criteria can be achieved in practice.
The development of strong social and emotional skills is central to personal wellbeing. Increasingly, these skills are being taught in schools through well researched curricula. Such social-emotional learning (SEL) curricula are most effective if reinforced by parents, thus transferring the skills into everyday contexts. Traditional SEL programs have however had limited success in engaging parents, and we argue that technology might be able to help bridge this school-home divide. Through interviews with SEL experts we identified central design considerations for technology and SEL content: the reliance on experiential learning and the need to scaffold the parents in scaffolding the interaction for their children. This informed the design of a technology probe comprising a magnet card and online SEL activities, deployed in a school and via Mturk. The results provide a nuanced understanding of how technology-based interventions could bridge the school-home gap in real-world settings and support at-home reinforcement of children's social-emotional skills.
Due to the progressive ageing of the world population, new care models are required to maintain elderly’s quality of life. These models should include the informal carer (IC) who usually lacks of skills and knowledge to develop assistance tasks. Therefore, support in decision making and informal carer empowerment are crucial to prevent and reduce the burden and stress suffered in the elderly care provided. This paper describes the Virtual Carer system aimed at supporting IC with a set of recommendations adapted to problems suffered in the activities of daily care developed or in daily activities of the older adult. The activities are detected by a set of sensors deployed in older adult’s home or a questionnaires to be filled by the IC. The recommendation are sent to IC by means of text messages or email as well as learning videos accessible from e-learning system. As example, a particular use case of the Virtual Carer has been presented to show the information process of problems in IC’s sleep patterns
Background:
This study assessed how family caregivers for patients with Alzheimer's disease (AD) or dementia in Japan differed from non-caregivers in characteristics and health outcomes (i.e., comorbidities, health-related quality of life [HRQoL], productivity, and resource use). Caregivers were hypothesized to experience significantly poorer outcomes than non-caregivers.
Methods:
Data were combined from the 2012 and 2013 National Health and Wellness Survey in Japan (n = 60000). Caregivers for adult relatives with AD or dementia were compared with non-caregivers on: comorbidities (including Patient Health Questionnaire (PHQ-9) cutoff scores suggesting presence/absence of major depressive disorder (MDD)), Work Productivity and Activity Impairment (WPAI), SF-36v2-based HRQoL, and healthcare resource utilization. Sociodemographic characteristics, health characteristics and behaviors, and Charlson comorbidity index (CCI) scores were compared across groups. Propensity matching, based on scores generated from a logistic regression predicting caregiving, was used to match caregivers with non-caregivers with similar likelihood of being caregivers. Bivariate comparisons across matched groups served to estimate outcomes differences due to caregiving.
Results:
Among 55060 respondents, compared with non-caregivers (n = 53758), caregivers (n = 1302) were older (52.6 vs. 47.5 years), more frequently female (53 % vs. 49 %), married/partnered, frequent alcohol drinkers, current smokers, exercisers, and not employed, and they averaged higher CCI scores (0.37 vs. 0.14), all p < 0.05. Propensity scores incorporated sex, age, body mass index (BMI), exercise, alcohol, smoking, marital status, CCI, insured status, education, employment, income, and children in household. A greedy matching algorithm produced 1297 exact matches, excluding 5 non-matched caregivers. Health utilities scores were significantly lower among caregivers (0.724) vs. non-caregivers (0.764), as were SF-36v2 Physical and Mental Component Summary scores. Caregivers vs. non-caregivers had significantly higher absenteeism, presenteeism-related impairment, overall work impairment (25.8 % vs. 20.4 %, respectively), and activity impairment (25.4 % vs. 21.8 %), more emergency room and traditional provider visits (7.70 vs. 5.35) in the past six months, and more frequent MDD (14 % vs. 9 %), depression, insomnia, anxiety, and pain.
Conclusions:
Those providing care for patients with AD or dementia in Japan experienced significantly poorer HRQoL and greater comorbid risk, productivity impairment, and resource use. These findings inform the need for greater support for caregivers and their patients.
Awareness of the huge amount of work faced by relatives in caring for a person suffering from a loss of autonomy has led to research focusing on ways to ease the burden on informal caregivers. Among them, services and devices aimed at providing social support and fighting the isolation that may be caused by the caregiving tasks appear important. However, little is known about the social support informal caregivers actually value and look for in practice. To fill this gap, we conducted a multi-sited study, focusing on older informal caregivers, because they are numerous and have lower experience with technology. Our study highlights that being part of a group is a key element in helping informal caregivers to feel that they are not alone, continue leisure activities, learn from others and sustain participation in organized activities. Through this understanding, we discuss design opportunities in a sociotechnical approach complementing online and offline social support.
Adolescents with complex chronic illnesses, such as cancer and blood disorders, must partner with family and clinical caregivers to navigate risky procedures with life-altering implications, burdensome symptoms and lifelong treatments. Yet, there has been little investigation into how technology can support these partnerships. We conducted 38 in-depth interviews (15 with teenage adolescents with chronic forms of cancer and blood disorders, 15 with their parents, and eight with clinical caregivers) along with nine non-participant observations of clinical consultations, to better understand common challenges and needs that could be supported through design. Participants faced challenges primarily concerning: 1) teens' limited participation in their care, 2) communicating emotionally-sensitive information, and 3) managing physical and emotional responses. We draw on these findings to propose design goals for sociotechnical systems to support teens in partnering in their care, highlighting the need for design to support gradually-evolving partnerships.
Many studies show that self-care technologies can support patients with chronic conditions and their carers in understanding the ill body and increasing control of their condition. However, many of these studies have largely privileged a medical perspective and thus overlooked how patients and carers integrate self-care into their daily lives and mediate their conditions through technology. In this review, we focus on how patients and carers use and experience self-care technology through a Human-Computer Interaction (HCI) lens. We analyse studies of self-care published in key HCI journals and conferences using the Grounded Theory Literature Review (GTLR) method and identify research trends and design tensions. We then draw out opportunities for advancing HCI research in self-care, namely, focusing further on patients' everyday life experience, considering existing collaborations in self-care, and increasing the influence on medical research and practice around self-care technology.
Children with complex health conditions require care from a large, diverse team of caregivers that includes multiple types of medical professionals, parents and community support organizations. Coordination of their outpatient care, essential for good outcomes, presents major challenges. Extensive healthcare research has shown that the use of integrated, team-based care plans improves care coordination, but such plans are rarely deployed in practice. This paper reports on a study of care teams treating children with complex conditions at a major university tertiary care center. This study investigated barriers to plan implementation and resultant care coordination problems. It revealed the complex nature of teamwork in complex care, which poses challenges to team coordination that extend beyond those identified in prior work and handled by existing coordination systems. The paper builds on a computational teamwork theory to identify opportunities for technology to support increased plan-based complex-care coordination and to propose design approaches for systems that enable and enhance such coordination.
Health and wellness have drawn significant attention in the HCI and CSCW communities. Many prior studies have focused on designing technologies that are patient-centric, allowing caregivers to take better care of patients. Less has been done in understanding and minimizing the burden of caregiving in caregivers' own lives. We conducted a qualitative interview study to understand their experiences in caregiving. The findings reveal a great magnitude of challenges in the caregivers' day-to-day lives, ranging from the physical and social, to the personal and emotional. Caregivers have to constantly balance their personal lives with work, family, and their caregiver roles, which can be overwhelmingly stressful. We discuss how caregivers attempt maintaining this balance through two concepts: first, giving-impact, and second, visibility-invisibility. Our study's findings call for system design that focuses not only on patients but also caregivers, addressing the burdens that often impair their health and wellness.
This study addresses how people with chronic illnesses (1) measure their pursuits as indicators of their health and (2) adopt such measures as markers of who they are and are becoming. Ultimately, such markers can become part of the person's self-concept. This article notes how work generates measures, but emphasizes those that people derive from their avocational interests. Measuring pursuits includes scrutinizing involvements, accounting for illness, and setting priorities. I describe how people interpret and construct markers from their measures and how they preserve self through fitness and then conclude by discussing the implications of the analysis. 165 qualitative interviews of chronically ill persons form the data of the study and grounded theory methods provide the guidelines for analysis.
In the recent years, the number of individuals engaged in self-care of chronic diseases has grown exponentially. Advances in computing technologies help individuals with chronic diseases collect unprecedented volumes of health-related data. However, engaging in reflective analysis of the collected data may be challenging for the untrained individuals. We present MAHI, a health monitoring application that assists newly diagnosed individuals with diabetes in acquiring and developing reflective thinking skills through social interaction with diabetes educators. The deployment study with twenty five newly diagnosed individuals with diabetes demonstrated that MAHI significantly contributed to individuals' achievement of their diabetes management goals (changing diet). More importantly, MAHI inspired individuals to adopt Internal Locus of Control, which often leads to persistent engagement in self-care and positive health outcomes.
This paper reports on a study of a newly developed system for assisted living, which was implemented in the homes of seven elderly residents. Based on these findings we point out three fundamental issues that will enrich and improve the use of technology for assisted living in the home. Firstly, we argue that the technology must co-evolve with the elderly people as their needs change, thereby building on an existing familiarity with a given system or artifact. Secondly, we argue that there is a need to seriously take into account the qualities of the domestic setting in both design and deployment, and that social as well as clinical aspects must be considered when designing for assisted living. Thirdly, we argue that technology must be much easier to deploy, use and comprehend for the elder users. We then outline our future work on developing technology for assisted living.
Upon leaving the hospital, parents of high-risk infants experience a variety of challenges in providing care at home. In this work, we present results from a qualitative study to understand the role of social interaction and information-sharing surrounding high-risk infants among both home caregivers and health professionals. These results demonstrate challenges in communication and social support for caregivers of these infants. Based on these results, we present design guidelines for collaborative communication technologies for this population and a prototype system design that demonstrates how these design guidelines might be met in a mobile application. Finally, we discuss how collaborative technologies can serve to improve communication with professionals as well as provide much-needed social support.
Developing a universal quality standard for thematic analysis (TA) is complicated by the existence of numerous iterations of TA that differ paradigmatically, philosophically and procedurally. This plurality in TA is often not recognised by editors, reviewers or authors, who promote ‘coding reliability measures’ as universal requirements of quality TA. Focusing particularly on our reflexive TA approach, we discuss quality in TA with reference to ten common problems we have identified in published TA research that cites or claims to follow our guidance. Many of the common problems are underpinned by an assumption of homogeneity in TA. We end by outlining guidelines for reviewers and editors – in the form of twenty critical questions – to support them in promoting high(er) standards in TA research, and more deliberative and reflexive engagement with TA as method and practice.
No work is inherently either visible or invisible. We always “see” work through a selection of indicators: straining muscles, finished artifacts, a changed state of affairs. The indicators change with context, and that context becomes a negotiation about the relationship between visible and invisible work. With shifts in industrial practice these negotiations require longer chains of inference and representation, and may become solely abstract.This article provides a framework for analyzing invisible work in CSCW systems. We sample across a variety of kinds of work to enrich the understanding of how invisibility and visibility operate. Processes examined include creating a “non-person” in domestic work; disembedding background work; and going backstage. Understanding these processes may inform the design of CSCW systems and the development of related social theory.
Healthcare providers play a critical role in the management of a chronic illness by providing education about the disease, recommending treatment options, and developing care plans. However, when managing a rare disease, patients and their primary caregivers often work with healthcare systems that lack the infrastructure to diagnosis, treat, or provide education on the disease. Little research has explored care coordination practices between patients, family members, and healthcare providers under these circumstances. With the goal of identifying opportunities for technological support, we conducted qualitative interviews with the primary caregivers of children with a rare neurodegenerative disorder, ataxia-telangiectasia. We report on the responsibilities that the primary caregivers take on in response to care teams' lack of experience with the illness, and the ways in which an online health community supports this care coordination work. We also describe barriers that limited participants' use of the online health community, including the emotional consequences of participation and information overload. Based on these findings, we discuss two promising research agendas for supporting rare disease management: facilitating primary caregivers' care coordination tasks and increasing access to online community knowledge.
Since initially writing on thematic analysis in 2006, the popularity of the method we outlined has exploded, the variety of TA approaches have expanded, and, not least, our thinking has developed and shifted. In this reflexive commentary, we look back at some of the unspoken assumptions that informed how we wrote our 2006 paper. We connect some of these un-identified assumptions, and developments in the method over the years, with some conceptual mismatches and confusions we see in published TA studies. In order to facilitate better TA practice, we reflect on how our thinking has evolved – and in some cases sedimented – since the publication of our 2006 paper, and clarify and revise some of the ways we phrased or conceptualised TA, and the elements of, and processes around, a method we now prefer to call reflexive TA.
This study focuses on solutions to issues that arise from gaps in communication between primary family caregivers of older adults and respite caregivers. We collected data through 18 semi-structured interviews with primary family and respite caregivers and qualitatively analyzed the interviews to extract common needs. Participants identified three main needs that our designs address: building trust through status updates, learning routines & care management, and accessing technology. Based on those needs, we designed a prototype of an application which connects primary family caregivers with respite caregivers and facilitates communication between the involved parties. This design can serve as a framework for future work designed to improve elder care in general, the well-being of caregivers, and the effectiveness of respite care.
Virtual Reality (VR) is a growing source of entertainment, but people who are visually impaired have not been effectively included. Audio cues are motivated as a complement to visuals, making experiences more immersive, but are not a primary cue. To address this, we implemented a VR game called Virtual Showdown. We based Virtual Showdown on an accessible real-world game called Showdown, where people use their hearing to locate and hit a ball against an opponent. Further, we developed Verbal and Verbal/Vibration Scaffolds to teach people how to play Virtual Showdown. We assessed the acceptability of Virtual Showdown and compared our scaffolds in an empirical study with 34 youth who are visually impaired. Thirty-three participants wanted to play Virtual Showdown again, and we learned that participants scored higher with the Verbal Scaffold or if they had prior Showdown experience. Our empirical findings inform the design of future accessible VR experiences.
Health informatics interventions are designed to help people avoid, recover from, or cope with disease and disability, or to improve the quality and safety of healthcare. Unfortunately, they pose a risk of producing intervention-generated inequalities (IGI) by disproportionately benefiting more advantaged people. In this perspective paper, we discuss characteristics of health-related interventions known to produce IGI, explain why health informatics interventions are particularly vulnerable to this phenomenon, and describe safeguards that can be implemented to improve health equity. We provide examples in which health informatics interventions produced inequality because they were more accessible to, heavily used by, adhered to, or effective for those from socioeconomically advantaged groups. We provide a brief outline of precautions that intervention developers and implementers can take to guard against creating or worsening inequality through health informatics. We conclude by discussing evaluation approaches that will ensure that IGIs are recognized and studied.
Improving volunteer performance leads to better caregiving in dementia care settings. However, caregiving knowledge systems have been focused on eliciting and sharing expert, primary caregiver knowledge, rather than volunteer-provided knowledge. Through the use of an experience prototype, we explored the content of volunteer caregiver knowledge and identified ways in which such non-expert knowledge can be useful to dementia care. By using lay language, sharing information specific to the client and collaboratively finding strategies for interaction, volunteers were able to boost the effectiveness of future volunteers. Therapists who reviewed the content affirmed the reliability of volunteer caregiver knowledge and placed value on its recency, variety and its ability to help bridge language and professional barriers. We discuss how future systems designed for eliciting and sharing volunteer caregiver knowledge can be used to promote better dementia care.
Previous research has shown that tracking technologies have the potential to help family caregivers optimize their coping strategies and improve their relationships with care recipients. In this paper, we explore how sharing the tracked data (i.e., caregiving journals and patient's conditions) with other family caregivers affects home care and family communication. Although previous works suggested that family caregivers may benefit from reading the records of others, sharing patients' private information might fuel negative feelings of surveillance and violation of trust for care recipients. To address this research question, we added a sharing feature to the previously developed tracking tool and deployed it for six weeks in the homes of 15 family caregivers who were caring for a depressed family member. Our findings show how the sharing feature attracted the attention of care recipients and helped the family caregivers discuss sensitive issues with care recipients.
Informal caregivers, such as family members and friends, are important for maintaining the health and wellness of the elderly and the chronically ill. However, the complexity of informal caregiving has been under-studied in prior research. In this study, we attempt to answer two main questions – what makes the coordination of patient care so difficult among multiple informal caregivers, and what are the challenges that should be considered in designing technologies to facilitate informal care coordination? To answer these questions, we conducted a qualitative interview study with 15 individuals with caregiving experience. The findings of the study identified the main challenges faced by caregivers in maintaining awareness, coordinating handoffs among informal caregivers, and easing tensions among caregivers and patients. These findings revealed considerations unique for informal caregiver coordination, and helped inform the design of technologies to support the care coordination.
Novice programmers often have trouble installing, configuring, and managing disparate tools (e.g., version control systems, testing infrastructure, bug trackers) that are required to become productive in a modern collaborative software development environment. To lower the barriers to entry into software development, we created a prototype IDE for novices called CodePilot, which is, to our knowledge, the first attempt to integrate coding, testing, bug reporting, and version control management into a real-time collaborative system. CodePilot enables multiple users to connect to a web-based programming session and work together on several major phases of software development. An eight-subject exploratory user study found that first-time users of CodePilot spontaneously used it to assume roles such as developer/tester and developer/assistant when creating a web application together in pairs. Users felt that CodePilot could aid in scaffolding for novices, situational awareness, and lowering barriers to impromptu collaboration.
Previous research on healthcare technologies has shown how health tracking promotes desired behavior changes and effective health management. However, little is known about how the family caregivers' use of tracking technologies impacts the patient-caregiver relationship in the home. In this paper, we explore how health-tracking technologies could be designed to support family caregivers cope better with a depressed family member. Based on an interview study, we designed a simple tracking tool called Family Mood and Care Tracker (FMCT) and deployed it for six weeks in the homes of 14 family caregivers who were caring for a depressed family member. FMCT is a tracking tool designed specifically for family caregivers to record their caregiving activities and patient's conditions. Our findings demonstrate how caregivers used it to better understand the illness and cope with depressed family members. We also show how our tool improves family communication, despite the initial concerns about patient-caregiver conflicts.
Eliciting, understanding, and honoring patients' values— the things most important to them in daily life—is a cornerstone of patient-centered care. However, this rarely occurs explicitly as a routine part of clinical practice. This is particularly problematic for individuals with multiple chronic conditions (MCC) because they face difficult choices about how to balance competing demands for self-care in accordance with their values. In this study, we sought to inform the design of interventions to support conversations about patient values between patients with MCC and their health care providers. We conducted a field study that included observations of 21 clinic visits for patients who have MCC, and interviews with 16 care team members involved in those visits. This paper contributes a practice-based account of ways in which providers engage with patient values, and discusses how future work in interactive systems design might extend and enrich these engagements.
Designing systems to support the social context of personal data is a topic of importance in CSCW, particularly in the area of health and wellness. The relational complexities and psychological consequences of living with health data, however, are still emerging. Drawing on a 12+ month ethnography and corroborating survey data, we detail the experiences of parents using Nightscout--an open source, DIY system for remotely monitoring blood glucose data-with their children who have type one diabetes. Managing diabetes with Nightscout is a deeply relational and (at times) contested activity for parent-caregivers, whose practices reveal the tensions and vulnerabilities of caregiving work enacted through data. As engagement with personal data becomes an increasingly powerful way people experience life, our findings call for alternative data narratives that reflect a multiplicity of emotional concerns and social arrangements. We propose the analytic lens of caring-through-data as a way forward.
Most adult children take care of their parents as they become older. However, the way in which families articulate themselves to care for their older members depends on cultural and social factors, which are different across societies. Given these differences, the design of CSCW systems and related services to support informal elderly caregiving requires contextual understanding of the complex and diverse living experiences and needs of older adults. This paper presents a cross-generational study to better understand the cooperative nature of informal elderly caregiving in Chile and Argentina. The study results show that family members assume implicit roles to fulfill their duties, with practically no coordination and no visibility of the assumed commitments within the family network. This implies that the articulation of the elderly caregiving is inefficient, conflict prone, and unbalanced, where family members assume a separation of concerns based on gender and kinship relationship with the older adult.
Informal caregivers, such as close friends and family, play an important role in a hospital patientâs care. Although CSCW researchers have shown the potential for social computing technologies to help patients and their caregivers manage chronic conditions and support health behavior change, few studies focus on caregiversâ role during a multi-day hospital stay. To explore this space, we conducted an interview and observation study of patients and caregivers in the inpatient setting. In this paper, we describe how caregivers and patients coordinate and collaborate to manage patientsâ care and wellbeing during a hospital stay. We define and describe five roles caregivers adopt: companion, assistant, representative, navigator, and planner, and show how patients and caregivers negotiate these roles and responsibilities throughout a hospital stay. Finally, we identify key design considerations for technology to support patients and caregivers during a hospital stay.
In families composed of parents and children, the health of parents and children is often interrelated: the health of children can have an impact on the health of parents, and vice versa. However, the design of health tracking technologies typically focuses on individual self-tracking and self-management, not yet addressing family health in a unified way. To examine opportunities for family-centered health informatics, we interviewed 14 typically healthy families, interviewed 10 families with a child with a chronic condition, and conducted three participatory design sessions with children aged 7 to 11. Although we identified similarities between family-centered tracking and personal self-tracking, we also found families want to: (1) identify ripple effects between family members; (2) consider both caregivers and children as trackers to support distributing the burdens of tracking across family members; and (3) identify and pursue health guidelines that consider the state of their family (e.g., specific health guidelines for families that include a child with a chronic condition). We contribute to expanding the design lens from self-tracking to family-centered health tracking.
Participatory design is a growing practice in the field of Human Computer Interaction (HCI). This note is a review of how participatory design activities are a form of learning. The premise of this exploration is that participatory design is more than asking participants for their help in design. Instead, participatory design is a set of methods and practices used to scaffold the design experience, increasing participants' reflection of their own knowledge and accounting for their previous knowledge so they can more fully engage in the design process. This active reflection and considerations of pervious experiences are closely tied to metacognition and a number of learning theories. Exploring previous studies provides examples of how learning theories are enacted through participatory design and how a greater awareness of these theories can inform the practice of participatory design.
With much of the population now online, the field of HCI faces new and pressing issues of how to help people sustain online activity throughout their lives, including through periods of disability. The onset of cognitive impairment later in life affects whether and how individuals are able to stay connected online and manage their digital information. While caregivers play a critical role in the offline lives of adults with cognitive impairments, less is known about how they support and enable online interaction. Using a constructivist grounded theory approach, data from focus groups with caregivers of adults with cognitive impairments reveal four forms of cooperative work caregivers perform in the context of supporting online activity. We find that staying active online is a way of empowering and engaging adults with cognitive impairments, yet this introduces new forms of risk, surrogacy, and cooperative technology use to the already demanding work of caregiving.
Interactive learning environments such as intelligent tutoring systems and software tutorials often teach procedures with step-by-step demonstrations. This instructional scaffolding is typically authored by hand, and little can be reused across problem domains. In this work, we present a framework for generating interactive tutorials from an algorithmic representation of the problem-solving thought process. Given a set of mappings between programming language constructs and user interface elements, we step through this algorithm line-by-line to trigger visual explanations of each step. This approach allows us to automatically generate tutorials for any example problem that can be solved with this algorithm. We describe two prototype implementations in the domains of K-12 mathematics and educational games, and present results from two user studies showing that educational technologists can author thought-process procedures and that generated tutorials can effectively teach a new procedure to students.
Our research aims at informing the design of technological solutions to alleviate the stress resulting from the involvement of spouses of Alzheimer's disease patients as caregivers. For so doing, we have observed and analyzed the different offline solutions that are offered by a healthcare network in the Aube region (North-East of France). We discuss the key factors that we have identified for building an effective support network and identify five perspectives for the development of an online social support platform to lower the burden of spousal caregivers.
This paper focuses on the complex and intimate setting of domestic home care. The majority of care for chronically ill people is realized by non-professionals, the relatives, who are often overlooked. Many of these informal caregivers are also elderly and face multiple, seriously demanding challenges in the context of informal care 24/7. In order to support this increasing user group, their cooperative work and coordination adequately, it is essential to gain a better understanding of their care practices and needs. This paper is based on ethnography in ten households in Germany. It combines data from the analysis of participant observations over eight months, interviews and cultural probes. Besides detailed descriptions of two cases, the central features of informal care experience and implications for design are discussed: the self-concept of the caregivers as being care experts, the need for social support, timing issues and coordination with other actors in this field.
Depression is one of the most common disabilities in developed countries. Despite its often devastating impact on families, scant research has focused on how to facilitate the well-being of family caregivers. The aim of this paper is to uncover the challenges faced by family caregivers and support their well-being with the use of technologies. To understand the emotional and social burden of caregivers and how they handle their stress, we conducted in-depth interviews with 15 individuals who have cared for a depressed family member. Our findings reveal the multifaceted dilemma of caring for a depressed family member as well as the various strategies engaged in by caregivers to improve their own situations. Based on our findings, we suggest design implications for healthcare technologies to improve the wellness of caregivers who are looking after depressed family members.
Survey questions asking about taboo topics such as sexual activities, illegal behaviour such as social fraud, or unsocial attitudes such as racism, often generate inaccurate survey estimates which are distorted by social desirability bias. Due to self-presentation concerns, survey respondents underreport socially undesirable activities and overreport socially desirable ones. This article reviews theoretical explanations of socially motivated misreporting in sensitive surveys and provides an overview of the empirical evidence on the effectiveness of specific survey methods designed to encourage the respondents to answer more honestly. Besides psychological aspects, like a stable need for social approval and the preference for not getting involved into embarrassing social interactions, aspects of the survey design, the interviewer’s characteristics and the survey situation determine the occurrence and the degree of social desirability bias. The review shows that survey designers could generate more valid data by selecting appropriate data collection strategies that reduce respondents’ discomfort when answering to a sensitive question.
Problems of managing chronic illness at home are addressed in terms of the concept of work: what types and subtypes of work, entailing what tasks, who does them, how, where, the consequences, the problems involved. Three types of work and consequences of their interplay are discussed: illness work, everyday life work, and biographical work. Theoretical concerns of the sociology of work are addressed as well as the substantive issues of managing chronic illness.
Participatory Design (PD) has a strong tradition in professional settings, including e.g. hospitals and nursing homes. As care and rehabilitation practices move, to a greater extent, out of the hospitals and into private homes a new take on PD is needed to facilitate design activities with patients or laypeople as the primary user groups and to design healthcare applications to be used primarily in the home. This paper discusses challenges and possibilities related to the design of home-based healthcare applications and especially the users' possibilities for participation in creative PD activities. Based upon ongoing design-work, related to home-based rehabilitation of elderly suffering from vestibular dysfunction (dizziness), this paper presents lessons learned and initial outcomes related to patient/citizen-focused development of healthcare solutions for private homes. We present initial ideas on how PD can be used to develop pervasive healthcare applications with less resourceful user-groups such as elderly people suffering from illness.