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.

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.

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.

Effect of an Automated Advice Algorithm (CloudConnect) on Adolescent-Parent Diabetes-Specific Communication and Glycemic Management: A Randomized Trial.

INTRODUCTION: Because adolescence is a time of difficult management of Type 1 diabetes (T1D) in part from adolescent-parent shared responsibility of T1D management, our objective was to assess the effects of a decision support system (DSS) CloudConnect on T1D-related communication between adolescents and their parents and on glycemic management. METHODS: We followed 86 participants including 43 adolescents with T1D (not on automated insulin delivery systems, AID) and their parents/care-giver for a 12-week intervention of UsualCare + CGM or CloudConnect, which included a Weekly Report of automated T1D advice, including insulin dose adjustments, based on data from continuous glucose monitors (CGM), Fitbit and insulin use. Primary outcome was T1D-specific communication and secondary outcomes were hemoglobin A1c, time-in-target range (TIR) 70-180 mg/dl, and additional psychosocial scales. RESULTS: Adolescents and parents reported a similar amount of T1D-related communication in both the UsualCare + CGM or CloudConnect groups and had similar levels of final HbA1c. Overall blood glucose time in range 70-180 mg/dl and time below 70 mg/dl were not different between groups. Parents but not children in the CloudConnect group reported less T1D-related conflict; however, compared to the UsualCare + CGM group, adolescents and parents in the CloudConnect reported a more negative tone of T1D-related communication. Adolescent-parent pairs in the CloudConnect group reported more frequent changes in insulin dose. There were no differences in T1D quality of life between groups. CONCLUSIONS: While feasible, the CloudConnect DSS system did not increase T1D communication or provide improvements in glycemic management. Further efforts are needed to improve T1D management in adolescents with T1D not on AID systems.

Race, Class, and Place Modify Mortality Rates for the Leading Causes of Death in the United States, 1999-2021.

BACKGROUND: Race and ethnicity, socioeconomic class, and geographic location are well-known social determinants of health in the US. Studies of population mortality often consider two, but not all three of these risk factors. OBJECTIVES: To disarticulate the associations of race (whiteness), class (socioeconomic status), and place (county) with risk of cause-specific death in the US. DESIGN: We conducted a retrospective analysis of death certificate data. Bayesian regression models, adjusted for age and race/ethnicity from the American Community Survey and the county Area Deprivation Index, were used for inference. MAIN MEASURES: County-level mortality for 11 leading causes of death (1999-2019) and COVID-19 (2020-2021). KEY RESULTS: County "whiteness" and socioeconomic status modified death rates; geospatial effects differed by cause of death. Other factors equal, a 20% increase in county whiteness was associated with 5-8% increase in death from three causes and 4-15% reduction in death from others, including COVID-19. Other factors equal, advantaged counties had significantly lower death rates, even when juxtaposed with disadvantaged ones. Patterns of residual risk, measured by spatial county effects, varied by cause of death; for example: cancer and heart disease death rates were better explained by age, socioeconomic status, and county whiteness than were COVID-19 and suicide deaths. CONCLUSIONS: There are important independent contributions from race, class, and geography to risk of death in the US.

What makes a home? Designing home personas to represent the homes of families caring for children with medical complexity.

Personas are widely recognized as valuable design tools for communicating dimensions of individuals, yet they often lack critical contextual factors. For those people managing chronic health conditions, the home is a critical context of their patient work system (PWS). We propose the development of 'home personas' to convey essential aspects of the home context to those tasked with designing technologies and interventions to fit it. We used an iterative, multi-stakeholder design process to design 'home personas' for a model population, families caring for children with medical complexity. Each of the four resultant home personas-Multi-level, Customized, Ranch, and Rental-has a unique home layout, pain points, and are described on three dimensions that emerged from the data. This study builds on a foundation of work in the emerging field of Patient Ergonomics, describing a mechanism for distilling rich descriptions of the PWS into brief yet informative design tools.

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.

Understanding Gaps Between Daily Living and Clinical Settings in Chronic Disease Management: Qualitative Study.

BACKGROUND: Management of chronic conditions entails numerous activities in both clinical and daily living settings. Activities across these settings interact, creating a high potential for a gap to occur if there is an inconsistency or disconnect between controlled clinical settings and complex daily living environments. OBJECTIVE: The aim of this study is to characterize gaps (from the patient's perspective) between health-related activities across home-based and clinical settings using anticoagulation treatment as an example. The causes, consequences, and mitigation strategies (reported by patients) were identified to understand these gaps. We conceptualized gaps as latent phenomena (ie, a break in continuity). METHODS: Patients (n=39) and providers (n=4) from the anticoagulation clinic of an urban, western mountain health care system were recruited. Data were collected through primary interviews with patients, patient journaling with tablet computers, exit interviews with patients, and provider interviews. Data were analyzed qualitatively using a theory-driven approach and framework method of analysis. RESULTS: The causes of gaps included clinician recommendations not fitting into patients' daily routines, recommendations not fitting into patients' living contexts, and information not transferred across settings. The consequences of these gaps included increased cognitive and physical workload on the patient, poor patient satisfaction, and compromised adherence to the therapy plan. We identified resources and strategies used to overcome these consequences as patient-generated strategies, routines, collaborative management, social environment, and tools and technologies. CONCLUSIONS: Understanding gaps, their consequences, and mitigating strategies can lead to the development of interventions that help narrow these gaps. Such interventions could take the form of collaborative health information technologies, novel patient and clinician education initiatives, and programs that strongly integrate health systems and community resources. Current technologies are insufficient to narrow the gaps between clinical and daily living settings due to the limited number and types of routines that are tracked.

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.