Macroergonomic components of the patient work system shaping dyadic care management during adolescence: a case study of type 1 diabetes.

The role of the social, physical, and organisational environments in shaping how patients and their caregivers perform work remains largely unexplored in human factors/ergonomics literature. This study recruited 19 dyads consisting of a parent and their child with type 1 diabetes to be interviewed individually and analysed using a macroergonomic framework. Our findings aligned with the macroergonomic factors as presented in previous models, while highlighting the need to expand upon certain components to gain a more comprehensive representation of the patient work system as relevant to dyadic management. Examples of design efforts that should follow from these findings include expanding existing data sharing options to include information from the external environment and capitalising on the capabilities of artificial intelligence as a decision support system. Future research should focus on longitudinally assessing patient work systems throughout transition periods in addition to more explicitly exploring the roles of social network members.

Work performed by patients and their caregivers is shaped by the social, physical, and organisational contexts they are embedded within. This paper explored how adolescents with type 1 diabetes managed their health alongside their parents in the context of these macroergonomic factors. These findings have implications for research and design.

Examining the economic impacts of caregiving among families of children of medical complexity: A qualitative study to inform inclusive economic models.

BACKGROUND: Children with medical complexity (CMC) represent a heterogeneous group of children with multiple, chronic healthcare conditions. Caregivers of CMC experience a high intensity of caregiving that is often variable, extends across several networks of care, and often lasts for the entirety of the child's life. The economic impacts of caregiving are yet understudied in the CMC context. There have been recognized limitations to the sole use of quantitative methods when developing economic models of disease because they lack direct caregiver voice and context of caregiving activities and existing methods have been noted to be ableist. OBJECTIVE: The purpose of this study was to explore the economic spillover impacts of caregiving among families of CMC using their own words and perspectives with the intent of expanding caregiver-centered perspectives when developing economic models. METHODS: This study was a secondary analysis of a qualitative study that was conducted to examine family management practices among caregivers of CMC and their social networks. Caregivers of CMC were recruited through a Pediatric Complex Care clinic at an academic medical center in the mid-Atlantic region, USA. This study used inductive qualitative descriptive methods and the use of a template to define features of the person impacted and to define the economic construct as either a direct or indirect/spillover cost. RESULTS: Twenty caregivers were included in this study. Perspectives from the caregivers of CMC revealed several key themes: (1) time investment in caregiving - impacting the primary caregivers; (2) physical and mental health impacts - impacting the child themselves, siblings, and the primary caregivers; (3) impacts to leisure activities and self-care - impacting the child themselves, siblings, and the primary caregivers; (4) impacts to the social network/social capital. CONCLUSIONS: The themes described can be operationalized into inclusive family-centered models that represent the impacts of caregiving in the context of the family units of CMC. The use of qualitative methods to expand our development of quantitative economic models can be adapted to other populations where caregivers are involved in care. Caregivers can and should have an active voice in preference-based assessments that are operationalized in economic contexts to make them more inclusive. CLINICALTRIAL: n/a. INTERNATIONAL REGISTERED REPORT: RR2-10.2196/14810.

Designing for caregiving networks: a case study of primary caregivers of children with medical complexity.

OBJECTIVE: The study aimed to characterize the experiences of primary caregivers of children with medical complexity (CMC) in engaging with other members of the child's caregiving network, thereby informing the design of health information technology (IT) for the caregiving network. Caregiving networks include friends, family, community members, and other trusted individuals who provide resources, information, health, or childcare. MATERIALS AND METHODS: We performed a secondary analysis of two qualitative studies. Primary studies conducted semi-structured interviews (n = 50) with family caregivers of CMC. Interviews were held in the Midwest (n = 30) and the mid-Atlantic region (n = 20). Interviews were transcribed verbatim for thematic analysis. Emergent themes were mapped to implications for the design of future health IT. RESULTS: Thematic analysis identified 8 themes characterizing a wide range of primary caregivers' experiences in constructing, managing, and ensuring high-quality care delivery across the caregiving network. DISCUSSION: Findings evidence a critical need to create flexible and customizable tools designed to support hiring/training processes, coordinating daily care across the caregiving network, communicating changing needs and care updates across the caregiving network, and creating contingency plans for instances where caregivers are unavailable to provide care to the CMC. Informaticists should additionally design accessible platforms that allow primary caregivers to connect with and learn from other caregivers while minimizing exposure to sensitive or emotional content as indicated by the user. CONCLUSION: This article contributes to the design of health IT for CMC caregiving networks by uncovering previously underrecognized needs and experiences of CMC primary caregivers and drawing direct connections to design implications.

Establishing the Need for Anticipatory Symptom Guidance and Networked Models of Disease in Adaptive Family Management Among Children With Medical Complexity: Qualitative Study.

BACKGROUND: Caregivers of children with medical complexity navigate complex family management tasks for their child both in the hospital and home-based setting. The roles and relationships of members of their social network and the dynamic evolution of these family management tasks have been underexamined. OBJECTIVE: The purpose of this study was to explore the structures and processes of family management among caregivers of children with medical complexity, with a focus on the underlying dynamic nature of family management practices and the role of members of their social network. METHODS: This study used a qualitative approach to interview caregivers of children with medical complexity and members of their social network. Caregivers of children with medical complexity were recruited through an academic Children's Hospital Complex Care Clinic in the mid-Atlantic region and interviewed over a period of 1 to 3 days. Responses were analyzed using constructivist grounded theory and situational analysis to construct a new conceptual model. Only caregiver responses are reported here. RESULTS: In total, 20 caregivers were included in this analysis. Caregiver perspectives revealed the contextual processes that allowed for practices of family management within the setting of rapidly evolving symptoms and health concerns. The dynamic and adaptive nature of this process is a key underlying action supporting this novel conceptual model. The central themes underpinning the adaptive family management model include symptom cues, ongoing surveillance, information gathering, and acute on chronic health concerns. The model also highlights facilitators and threats to successful family management among children with medical complexity and the networked relationship among the structures and processes. CONCLUSIONS: The adaptive family management model provides a basis for further quantitative operationalization and study. Previously described self- or family management frameworks do not account for the underlying dynamic nature of the disease trajectory and the developmental stage progression of the child or adolescent, and our work extends existing work. For future work, there is a defined role for technology-enhanced personalized approaches to home-based monitoring. Due to the disparities caregivers and the children in this population already experience, technology-enhanced approaches must be built alongside key stakeholders with an equity orientation to technology co-development. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR2-10.2196/14810.

Designing mobile health to align with the social determinants of health.

The maternal health crisis in the United States is becoming increasingly worse, with disparities continuing to escalate among marginalized populations. mHealth can contribute to addressing the Social Determinants of Health (SDOH) that produce inequities in maternal morbidity and mortality. Reducing inequities through mHealth can be achieved by designing these technologies to align with SDOH. As mHealth developed to support maternal health has primarily supported the extension of clinical care, there is an opportunity to integrate frameworks and methods from human factors/ergonomics and public health to produce thorough comprehension of SDOH through intentional partnerships with marginalized populations. Potential for this opportunity is presented through a case study derived from a community-based participatory research process focused on transportation access to maternal health services. Through multi-faceted, interdisciplinary, and community-based approaches to designing mHealth that attends to the systemic factors that generate and escalate inequities, improvements in the maternal health crisis could be realized.

Access to Healthcare Among US Adult Refugees: A Systematic Qualitative Review.

Refugees encounter numerous healthcare access barriers in host countries, leading to lower utilization rates and poorer health outcomes. In the US, social inequities and fragmented health systems may exacerbate these disparities. Understanding these factors is necessary to ensure equitable care of refugee populations. A systematic literature review of qualitative studies on US adult refugee healthcare access from January 2000 to June 2021 was performed in accordance with PRISMA. Studies were analyzed deductively and then inductively to incorporate previous findings in other resettlement countries and emergence of US-specific themes. 64 articles representing 16+ countries of origin emerged from the final analysis, yielding nine interrelated themes related to health literacy, cost of services, cultural beliefs, and social supports, among others. The main challenges to refugees' healthcare access emerge from the interactions of care fragmentation with adverse social determinants. Given diverse barriers, integrated care models are recommended in treating refugee populations.

Automation in health care: the need for an ergonomics-based approach.

Healthcare quality and efficiency challenges degrade outcomes and burden multiple stakeholders. Workforce shortage, burnout, and complexity of workflows necessitate effective support for patients and providers. There is interest in employing automation, or the use of 'computer[s] [to] carry out… functions that the human operator would normally perform', in health care to improve delivery of services. However, unique aspects of health care require analysis of workflows across several domains and an understanding of the ways work system factors interact to shape those workflows. Ergonomics has identified key work system issues relevant to effective automation in other industries. Understanding these issues in health care can direct opportunities for the effective use of automation in health care. This article illustrates work system considerations using two example workflows; discusses how those considerations may inform solution design, implementation, and use; and provides future directions to advance the essential role of ergonomics in healthcare automation.

This article highlights the essential role of ergonomics in the effective design, implementation, and use of automation in health care. By discussing unique considerations for automation in health care and through two illustrative examples, we demonstrate the importance of an ergonomics approach for developing automated healthcare solutions.

Provocations for Reimagining Informatics Approaches to Health Equity.

As the informatics community commits to the goal of advancing health equity, it is essential that we openly critique our current approaches and reimagine the ways in which we design, implement, evaluate, and advocate for policies related to informatics interventions. In this paper, we present five provocations as a starting point for building more conscientious informatics practice in service of this goal: 1) Health informatics interventions can create an "illusion of impactful action" without significant material benefits for marginalized patients, families, and communities; 2) Health informatics interventions target the wrong stakeholders, the wrong processes, and the wrong technologies to achieve equity; 3) Informaticians must conceptualize health literacy and other factors shaping patients' experiences as a system-level rather than individual-level characteristic; 4) Informatics interventions wrongly assume that interacting contextual factors can be meaningfully captured by over-simplified structured variables; and 5) Informatics interventions often specify the wrong system boundaries and solution space. We further assert that drastic shifts in our current practices will allow us to honor our claims of valuing patient-centered approaches, especially for marginalized communities.

Consumer Health Informatics for Racial and Ethnic Minoritized Communities: Minor Progress, Major Opportunities.

OBJECTIVE: By reducing barriers to accessing health services and by supporting health management, consumer health informatics has the potential to reduce health disparities. Yet, technologies are still being designed without considerations for racial and ethnic minoritized populations. This paper reviews consumer health informatics research within this population to assess for whom and how such technologies are being designed. METHODS: We searched four databases from January 2020- December 2021 for literature focused on consumer health informatics and racial and ethnic minoritized populations. We extracted information about the study population, geographic location, stage of the design lifecycle, culturally tailored approaches, community engagement strategies, and considerations for the social determinants of health. RESULTS: Twenty articles were included in the review. Most of the included literature were original research articles that tested health management interventions focused on one racial or ethnic minoritized population primarily within a confined geographic area within the United States. Seven studies described the extent to which an intervention was culturally tailored, including modifying the content, interface, functionality, and platform. Community engagement strategies varied, but few articles employed robust approaches. Lastly, seven studies detailed considerations for the social determinants of health, including providing hardware to access interventions and incorporating information about community-based resources within an intervention. CONCLUSIONS: There has been moderate progress in consumer health informatics focused on racial and ethnic minoritized populations and many opportunities remain for these technologies to be used as an approach to address health disparities. Future research should utilize community engagement strategies to design interventions that are attune to multiple racial and ethnic minoritized populations across geographic regions in addition to numerous intersectional identities and multiple co-morbidities.

Engaging the disability community in informatics research: rationales and practical steps.

As the informatics community grows in its ability to address health disparities, there is an opportunity to expand our impact by focusing on the disability community as a health disparity population. Although informaticians have primarily catered design efforts to one disability at a time, digital health technologies can be enhanced by approaching disability from a more holistic framework, simultaneously accounting for multiple forms of disability and the ways disability intersects with other forms of identity. The urgency of moving toward this more holistic approach is grounded in ethical, legal, and design-related rationales. Shaped by our research and advocacy with the disability community, we offer a set of guidelines for effective engagement. We argue that such engagement is critical to creating digital health technologies which more fully meet the needs of all disabled individuals.

The lived experience during the peri-diagnostic period of breast cancer: A scoping review.

OBJECTIVES: The aim of this scoping review is to provide an overview of the existing research that investigates the lived experience during the peri-diagnostic period of breast cancer. METHODS: Nine databases were searched for relevant literature between January 2007 and April 2019. Data were extracted and categorized using deductive and inductive approaches. RESULTS: A majority of the 66 studies included used qualitative methods to retrospectively explore the treatment decision making process of female breast cancer patients. Patients experienced uncertainty, emotional distress, and a need for more information from providers and relied on social support and family guidance during this period. CONCLUSIONS: The results of this review show that the burdens experienced during the peri-diagnostic period parallel those in later periods of cancer care. However, these burdens are prompted by different circumstances. More research is needed to explore the lived experience during this period through the use of mixed-methods and by recruiting a diverse sample with regards to role in the breast cancer experience, age, gender, race, and ethnicity. PRACTICE IMPLICATIONS: Interventions positioned at earlier points in the breast cancer experience should provide informational support, which could be delivered through shared decision making models. Additional support could be facilitated by patient navigation programs and health information technology.

Designing Consumer Health Information Technology to Support Biform and Articulation Work: A Qualitative Study of Diet and Nutrition Management as Patient Work.

BACKGROUND: Diet and nutrition management is an integral component of Crohn disease (CD) management. This type of management is highly variable and individualized and, thus, requires personalized approaches. Consumer health information technology (CHIT) designed to support CD management has typically supported this task as everyday life work and, not necessarily, as illness work. Moreover, CHIT has rarely supported the ways in which diet and nutrition management requires coordination between multiple forms of patient work. OBJECTIVE: The purpose of this study was to investigate diet and nutrition management as biform work, identify components of articulation work, and provide guidance on how to design CHIT to support this work. METHODS: We performed a qualitative study in which we recruited participants from CD-related Facebook pages and groups. RESULTS: Semistructured interviews with 21 individuals showed that diet and nutrition management strategies were highly individualized and variable. Four themes emerged from the data, emphasizing the interactions of diet and nutrition with physical, emotional, information, and technology-enabled management. CONCLUSIONS: This study shows that the extent to which diet and nutrition management is biform work fluctuates over time and that articulation work can be continuous and unplanned. The design guidance specifies the need for patient-facing technologies to support interactions among diet and nutrition and other management activities such as medication intake, stress reduction, and information seeking, as well as to respond to the ways in which diet and nutrition management needs change over time.

Informatics-enabled citizen science to advance health equity.

The COVID-19 pandemic has once again highlighted the ubiquity and persistence of health inequities along with our inability to respond to them in a timely and effective manner. There is an opportunity to address the limitations of our current approaches through new models of informatics-enabled research and clinical practice that shift the norm from small- to large-scale patient engagement. We propose augmenting our approach to address health inequities through informatics-enabled citizen science, challenging the types of questions being asked, prioritized, and acted upon. We envision this democratization of informatics that builds upon the inclusive tradition of community-based participatory research (CBPR) as a logical and transformative step toward improving individual, community, and population health in a way that deeply reflects the needs of historically marginalized populations.

Ensuring full participation of people with disabilities in an era of telehealth.

The widespread use of telehealth resulting from the COVID-19 pandemic has the potential to further exacerbate inequities faced by people with disabilities. Although, for some members of the disability community, the option to engage with telehealth may result in reduced barriers to care, for others, inadequate attention to the design, implementation, and policy dimensions may be detrimental. Addressing such considerations is imperative to mitigate health inequities faced by the disability community.

Remembering Ben-Tzion Karsh's scholarship, impact, and legacy.

Dr. Ben-Tzion (Bentzi) Karsh was a mentor, collaborator, colleague, and friend who profoundly impacted the fields of human factors and ergonomics (HFE), medical informatics, patient safety, and primary care, among others. In this paper we honor his contributions by reflecting on his scholarship, impact, and legacy in three ways: first, through an updated simplified bibliometric analysis in 2020, highlighting the breadth of his scholarly impact from the perspective of the number and types of communities and collaborators with which and whom he engaged; second, through targeted reflections on the history and impact of Dr. Karsh's most cited works, commenting on the particular ways they impacted our academic community; and lastly, through quotes from collaborators and mentees, illustrating Dr. Karsh's long-lasting impact on his contemporaries and students.

Understanding the experiences of self-injurious behavior in autism spectrum disorder: Implications for monitoring technology design.

OBJECTIVE: Monitoring technology may assist in managing self-injurious behavior (SIB), a pervasive concern in autism spectrum disorder (ASD). Affiliated stakeholder perspectives should be considered to design effective and accepted SIB monitoring methods. We examined caregiver experiences to generate design guidance for SIB monitoring technology. MATERIALS AND METHODS: Twenty-three educators and 16 parents of individuals with ASD and SIB completed interviews or focus groups to discuss needs related to monitoring SIB and associated technology use. RESULTS: Qualitative content analysis of participant responses revealed 7 main themes associated with SIB and technology: triggers, emotional responses, SIB characteristics, management approaches, caregiver impact, child/student impact, and sensory/technology preferences. DISCUSSION: The derived themes indicated areas of emphasis for design at the intersection of monitoring and SIB. Systems design at this intersection should consider the range of manifestations of and management approaches for SIB. It should also attend to interactions among children with SIB, their caregivers, and the technology. Design should prioritize the transferability of physical technology and behavioral data as well as the safety, durability, and sensory implications of technology. CONCLUSIONS: The collected stakeholder perspectives provide preliminary groundwork for an SIB monitoring system responsive to needs as articulated by caregivers. Technology design based on this groundwork should follow an iterative process that meaningfully engages caregivers and individuals with SIB in naturalistic settings.

Human-Computer Interaction, Ethics, and Biomedical Informatics.

OBJECTIVES: To provide an overview of recent work at the intersection of Biomedical Informatics, Human-Computer Interaction, and Ethics. METHODS: Search terms for Human-Computer Interaction, Biomedical Informatics, and Ethics were used to identify relevant papers published between 2017 and 2019.Relevant papers were identified through multiple methods, including database searches, manual reviews of citations, recent publications, and special collections, as well as through peer recommendations. Identified articles were reviewed and organized into broad themes. RESULTS: We identified relevant papers at the intersection of Biomedical Informatics, Human-Computer Interactions, and Ethics in over a dozen journals. The content of these papers was organized into three broad themes: ethical issues associated with systems in use, systems design, and responsible conduct of research. CONCLUSIONS: The results of this overview demonstrate an active interest in exploring the ethical implications of Human-Computer Interaction concerns in Biomedical Informatics. Papers emphasizing ethical concerns associated with patient-facing tools, mobile devices, social media, privacy, inclusivity, and e-consent reflect the growing prominence of these topics in biomedical informatics research. New questions in these areas will likely continue to arise with the growth of precision medicine and citizen science.

Citizen science to further precision medicine: from vision to implementation.

The active involvement of citizen scientists in setting research agendas, partnering with academic investigators to conduct research, analyzing and disseminating results, and implementing learnings from research can improve both processes and outcomes. Adopting a citizen science approach to the practice of precision medicine in clinical care and research will require healthcare providers, researchers, and institutions to address a number of technical, organizational, and citizen scientist collaboration issues. Some changes can be made with relative ease, while others will necessitate cultural shifts, redistribution of power, recommitment to shared goals, and improved communication. This perspective, based on a workshop held at the 2018 AMIA Annual Symposium, identifies current barriers and needed changes to facilitate broad adoption of a citizen science-based approach in healthcare.

Self-Management Characterization for Families of Children With Medical Complexity and Their Social Networks: Protocol for a Qualitative Assessment.

BACKGROUND: Children with medical complexity (CMC) present rewarding but complex challenges for the health care system. Transforming high-quality care practices for this population requires multiple stakeholders and development of innovative models of care. Importantly, care coordination requires significant self-management by families in home- and community-based settings. Self-management often requires that families of CMC rely on vast and diverse social networks, encompassing both online and offline social relationships with individuals and groups. The result is a support network surrounding the family to help accomplish self-management of medical tasks and care coordination. OBJECTIVE: The goal of this study is to use a theoretically driven perspective to systematically elucidate the range of self-management experiences across families of CMC embedded in diverse social networks and contextual environments. This approach will allow for characterization of the structure and process of self-management of CMC with respect to social networks, both in person and digitally. This research proposal aims to address the significant gaps in the self-management literature surrounding CMC, including the following: (1) how self-management responsibilities are distributed and negotiated among the social network and (2) how individual-, family-, and system-level factors influence self-management approaches for CMC from a theoretically driven perspective. METHODS: This study will encompass a qualitative descriptive approach to understand self-management practices among CMC and their social networks. Data collection and analysis will be guided by a theoretical and methodological framework, which synthesizes perspectives from nursing, human factors engineering, public health, and family counseling. Data collection will consist of semistructured interviews with children, parents, and social network members, inclusive of individuals such as friends, neighbors, and community members, as well as online communities and individuals. Data analysis will consist of a combination of inductive and deductive methods of qualitative content analysis, which will be analyzed at both individual and multiadic levels, where interview data from two or more individuals, focused on the same experience, will be comparatively analyzed. RESULTS: This study will take approximately 18 months to complete. Our long-term goals are to translate the qualitative analysis into (1) health IT design guidance for innovative approaches to self-management and (2) direct policy guidance for families of CMC enrolled in Medicaid and private insurance. CONCLUSIONS: Multiple innovative components of this study will enable us to gain a comprehensive and nuanced understanding of the lived experience of self-management of CMC. In particular, by synthesizing and applying theoretical and methodological approaches from multiple disciplines, we plan to create novel informatics and policy solutions to support their care within home and community settings. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): PRR1-10.2196/14810.

Patient ergonomics: 10-year mapping review of patient-centered human factors.

Patient ergonomics is the application of human factors or related disciplines to study and improve patients' and other non-professionals' performance of effortful work activities in pursuit of health goals. We performed a mapping review of 212 full-text patient ergonomics publications in two conference proceedings, 2007-2017. The review revealed a robust and growing body of literature on patient ergonomics, particularly in the areas of aging and chronic disease, tools and technologies, and evaluations of patient-centered interventions on outcomes such as usability, user acceptance, and performance. Findings highlighted gaps deserving future research, including research with understudied populations such as children, informal caregivers, networks and collectives (groups), and marginalized populations; on topics such as health promotion and transitions of care; and using longitudinal and experimental study designs. The growth of patient-centeredness in general and of patient ergonomics in particular compel other more focused reviews, new primary research, and developing a roadmap for future patient ergonomics research.