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.

Human-centered participatory co-design with children and adults for a prototype lifestyle intervention and implementation strategy in a rural middle school.

PURPOSE: The significance of regular physical activity (PA) in reducing cardiovascular disease (CVD) risk is widely acknowledged. However, children in rural areas encounter specific barriers to PA compared to their urban counterparts. This study employs human-centered participatory co-design, involving community stakeholders in developing a multi-level PA intervention named Hoosier Sport. The primary hypothesis is the co-design sessions leading to the development of a testable intervention protocol. METHODS: Two co-design teams, each consisting of six children and six adults, were formed using human-centered participatory co-design facilitated by research faculty and graduate students. The process involved five co-design sessions addressing problem identification, solution generation, solution evaluation, operationalization, and prototype evaluation. Thematic analysis was employed to identify key themes and intervention components. RESULTS: Child co-designers (n = 6) ranged from 6th to 8th grade, averaging 12.6 years (SD = 1.8), while adult co-designers (n = 6) averaged 43.3 years (SD = 8.08). Thematic analysis revealed children emphasizing autonomy, the freedom to choose physical and non-physical activities, and the importance of building peer relationships during PA. Adult interviews echoed the importance of autonomy and choice in activities, with a focus on relatedness through positive role modeling. CONCLUSION: The prototype intervention and implementation strategies developed constitute a testable intervention aligned with Phase 1 of the ORBIT model. This testable prototype lays the groundwork for a collaborative campus-community partnership between the university and the local community, ensuring mutual benefits and sustainable impact.

"I'm dealing with a health care system that doesn't get it": Barriers and facilitators to inclusive healthcare for autistic adults.

LAY ABSTRACT: Research has suggested that autistic adults may have a bigger chance of having mental health and physical health conditions such as depression, anxiety, sleep disorders, diabetes, obesity, and heart problems than adults without autism. Unfortunately, the unique healthcare needs of autistic adults are often overlooked, so it is not clear why autistic adults have worse health or what can be done to improve it. This study wants to find out the challenges autistic adults experience in taking care of their health and in going to different doctors. Researchers interviewed autistic adults across the country about their healthcare experiences. The interviewed autistic adults told the researchers about the barriers (things that did not help) and facilitators (things that did help) that impacted whether they received the care they needed. The researchers then organized what they learned from the autistic adults into a model called the Systems Engineering Initiative for Patient Safety model of work system and patient safety. This model explains how different parts of a healthcare system (person, tasks, technology and tools, environment, and organization) interact with one another and impact the healthcare experiences and outcomes of the patients in their care, like autistic adults. Overall, this study advocates for a systems-level approach to improving the healthcare experiences of autistic adults and their health outcomes.

Older Adults' Process of Collaborating With a Support Team During Transitions From Hospital to Home: A Grounded Theory Study.

BACKGROUND AND OBJECTIVES: Little is known about how older adults engage with multiple sources of support and resources during transitions from hospital to home, a period of high vulnerability. This study aims to describe how older adults identify and collaborate with a support team, including unpaid/family caregivers, health care providers, and professional and social networks, during the transition. RESEARCH DESIGN AND METHODS: This study utilized grounded theory methodology. One-on-one interviews were conducted with adults aged 60 and older following their discharge from a medical/surgical inpatient unit in a large midwestern teaching hospital. Data were analyzed using open, axial, and selective coding. RESULTS: Participants (N = 25) ranged from 60 to 82 years of age, 11 were female, and all participants were White, non-Hispanic. They described a process of identifying a support team and collaborating with that team to manage at home and progress their health, mobility, and engagement. Support teams varied, but included collaborations between the older person, unpaid/family caregiver(s), and their health care providers. Their collaboration was impacted by the participant's professional and social networks. DISCUSSION AND IMPLICATIONS: Older adults collaborate with multiple sources of support and this collaboration is a dynamic process that varies across phases of their transition from hospital to home. Findings reveal opportunities for assessing individual's support and social networks, in addition to health and functional status, to determine needs and leverage resources during transitions in care.

Feasibility of social network analysis to study outcomes of children with medical complexity.

Since most care for children with medical complexity (CMC) is delivered daily in communities by multiple caregiving individuals, that is, caregiving networks, tools to assess and intervene across these networks are needed. This study evaluated the feasibility of applying social network analysis (SNA) to describe caregiving networks. Because hospitalization is among the most frequently used outcomes for CMC, exploratory correlations between network characteristics and CMC hospital use were evaluated. Within 3 weeks, the goal network enrollment was achieved, and all feasibility measures were favorable. Network characteristics correlated with hospital use, that is, smaller, denser networks, with more closed-loop communication correlated with fewer hospital days. Networks with more professional caregivers also correlated with fewer hospital days. SNA is a feasible tool to study CMC caregiving networks. Preliminary data support rigorous hypothesis testing using SNA methods. Network-based interventions to improve CMC health may be an important future direction.

An mHealth Design to Promote Medication Safety in Children with Medical Complexity.

BACKGROUND: Children with medical complexity (CMC) are uniquely vulnerable to medication errors and preventable adverse drug events because of their extreme polypharmacy, medical fragility, and reliance on complicated medication schedules and routes managed by undersupported family caregivers. There is an opportunity to improve CMC outcomes by designing health information technologies that support medication administration accuracy, timeliness, and communication within CMC caregiving networks. OBJECTIVES: The present study engaged family caregivers, secondary caregivers, and clinicians who work with CMC in a codesign process to identify: (1) medication safety challenges experienced by CMC caregivers and (2) design requirements for a mobile health application to improve medication safety for CMC in the home. METHODS: Study staff recruited family caregivers, secondary caregivers, and clinicians from a children's hospital-based pediatric complex care program to participate in virtual codesign sessions. During sessions, the facilitator-guided codesigners in generating and converging upon medication safety challenges and design requirements. Between sessions, the research team reviewed notes from the session to identify design specifications and modify the prototype. After design sessions concluded, each session recording was reviewed to confirm that all designer comments had been captured. RESULTS: A total of N = 16 codesigners participated. Analyses yielded 11 challenges to medication safety and 11 corresponding design requirements that fit into three broader challenges: giving the right medication at the right time; communicating with others about medications; and accommodating complex medical routines. Supporting quotations from codesigners and prototype features associated with each design requirement are presented. CONCLUSION: This study generated design requirements for a tool that may improve medication safety by creating distributed situation awareness within the caregiving network. The next steps are to pilot test tools that integrate these design requirements for usability and feasibility, and to conduct a randomized control trial to determine if use of these tools reduces medication errors.

Care Partner Confidence and Experiences in Legal Planning for People Living with Dementia: A Mixed Methods Study.

BACKGROUND AND OBJECTIVES: Care partners of persons living with dementia perform complex legal planning tasks. The purpose of this study was to survey care partners in the United States to understand their confidence and experience in performing legal planning tasks. RESEARCH DESIGN AND METHODS: This study used a parallel-mixed methods research design. We administered a web-based survey to 318 adults who self-identified as care partners of persons living with dementia. The survey contained Likert scale questions and open-ended questions about legal planning tasks. Multivariate linear regression was used to analyze quantitative data and inductive thematic analysis was used to analyze qualitative data. RESULTS: Care partners were on average 53 years of age and 78% female. The three topics in which participants were least confident were: protecting oneself legally as a care partner; options when legal documents are not in place and a family member is not legally competent; and circumstances when legal documents should be updated or renewed. We observed significant differences in legal planning confidence between newer and more experienced care partners (p<.001); lower- and higher-income care partners (p=.01); and adult child versus spousal care partners (p<.001). Thematic analysis revealed that legal planning challenges include initiating a conversation with the person living with dementia, understanding and using legal materials, and accessing materials that accommodate individual differences. DISCUSSION AND IMPLICATIONS: It is vital to develop legal planning interventions that are tailored to specific subgroups of care partners, and to maximize the clarity, comprehensiveness, and accessibility of available legal planning education.

Hoosier Sport: a research protocol for a multilevel physical activity-based intervention in rural Indiana.

Introduction: Currently, only 1 in 4 children in the U.S. engage in the recommended amount of physical activity (PA) and disparities in PA participation increase as income inequities increase. Moreover, leading health organizations have identified rural health as a critical area of need for programming, research, and policy. Thus, there is a critical need for the development and testing of evidence-based PA interventions that have the potential to be scalable to improve health disparities in children from under-resourced rural backgrounds. As such, the present study utilizes human-centered design, a technique that puts community stakeholders at the center of the intervention development process, to increase our specific understanding about how the PA-based needs of children from rural communities manifest themselves in context, at the level of detail needed to make intervention design decisions. The present study connects the first two stages of the NIH Stage Model for Behavioral Intervention Development with a promising conceptual foundation and potentially sustainable college student mentor implementation strategy. Methods: We will conduct a three-phase study utilizing human-centered community-based participatory research (CBPR) in three aims: (Aim 1) conduct a CBPR needs assessment with middle school students, parents, and teachers/administrators to identify perceptions, attributes, barriers, and facilitators of PA that are responsive to the community context and preferences; (Aim 2) co-design with children and adults to develop a prototype multi-level PA intervention protocol called Hoosier Sport; (Aim 3) assess Hoosier Sport's trial- and intervention-related feasibility indicators. The conceptual foundation of this study is built on three complementary theoretical elements: (1) Basic Psychological Needs mini-theory within Self-Determination Theory; (2) the Biopsychosocial Model; and (3) the multilevel Research Framework from the National Institute on Minority Health and Health Disparities. Discussion: Our CBPR protocol takes a human-centered approach to integrating the first two stages of the NIH Stage Model with a potentially sustainable college student mentor implementation strategy. This multidisciplinary approach can be used by researchers pursuing multilevel PA-based intervention development for children.

A scoping review of unpaid caregivers' experiences during older adults' hospital-to-home transitions.

The objective of this scoping review is to examine current evidence regarding unpaid/family caregivers' experiences during older adults' hospital-to-home transitions to identify gaps and opportunities to involve caregivers in transitional care improvement efforts. Eligible articles focused on caregiver experience, outcomes, or interventions during older adults' hospital-to-home transitions. Our review identified several descriptive studies focused on exploring the caregiver experience of older adult hospital-to-home transitions and caregiver outcomes (such as preparedness, strain, burden, health, and well-being). Qualitative studies revealed challenges at multiple levels, including individual, interpersonal, and systemic. Few interventions have targeted or included caregivers to improve discharge education and address support needs during the transition. Future work should target underrepresented and marginalized groups of caregivers, and caregivers' collaboration with community-based services, social networks, or professional services. Work remains in developing and implementing interventions to support both older adult and caregiver needs.

Health system and patient-level factors associated with multidisciplinary care and patient education among hospitalized, older cancer survivors.

Objective: The purpose of this study was to examine system- and patient-level factors associated with the number of healthcare disciplines involved in delivery of patient education among hospitalized older cancer survivors. Methods: We used electronic health record (EHR) data from a single institution documenting patient education among hospitalized older patients (≥65 years) with a history of cancer between 9/1/2018 and 10/1/2019. We used parametric ordinal logistic regression to assess the number of healthcare disciplines involved in documented education activities. Results: The sample (n = 446) was predominantly male, White, and on average 74 years old. Adjusting for patient and system-level variables, men and larger department units had higher odds of receiving education from fewer healthcare disciplines. Patients with a history of breast or prostate cancer and longer lenths of stay had lower odds of receiving patient education from fewer healthcare disciplines. Conclusion: Hospital size, severity of illness, and cancer type are associated with delivery of multidisciplinary education in this sample. Innovation: EHR provides an opportunity to identify patterns in patient education among cancer survivors. Future research should investigate provider perspectives of the findings to inform provider- and system-level strategies to improve patient education.

Co-Design of a Financial and Legal Planning Tool for Care Partners of People Living With Alzheimer's Disease and Related Dementias.

Background and Objectives: Care partners of people living with Alzheimer's disease and related dementias (ADRD) are faced with substantial legal and financial planning related to their care partner role. However, many care partners lack the legal and financial support needed to manage this role. The purpose of this study was to engage ADRD care partners in a remote participatory design process to create a technology-based financial and legal planning tool that meets care partner needs. Research Design and Methods: We formed 2 researcher-facilitated co-design teams comprised of n = 5 ADRD care partners each. We conducted a series of 5 parallel co-design sessions aimed to engage co-designers in interactive discussions and design activities to create the financial and legal planning tool. We used inductive thematic analysis of design session recordings to identify design requirements. Results: Co-designers were 70% female with a mean age of 67.3 years (standard deviation 9.07) and cared for a spouse (80%) or a parent (20%). Between Sessions 3 and 5, the average system usability scale score of the prototype increased from 89.5 to 93.6, indicating high usability. Analyses yielded 7 overarching design requirements for a legal and financial planning tool: support for action now (eg, prioritized to-do lists); support for action later (eg, reminders for keeping legal documents up-to-date); knowledge when I need it (eg, tailored learning modules); connection to resources I need (eg, state-specific financial support opportunities); everything where I can see it (eg, comprehensive care budgeting tool); sense of privacy and security (eg, password protection); and accessibility for all (eg, tailoring for low-income care partners). Discussion and Implications: The design requirements identified by co-designers provide a foundation from which we can build technology-based solutions to support ADRD care partners in financial and legal planning.

Development and Validation of the Hospital-to-Home-Health Transition Quality (H3TQ) Index: A Novel Measure to Engage Patients and Home Health Providers in Evaluating Hospital-to-Home Care Transition Quality.

BACKGROUND: Patients requiring skilled home health care (HH) after hospitalization are at high risk of adverse events. Human factors engineering (HFE) approaches can be useful for measure development to optimize hospital-to-home transitions. OBJECTIVE: To describe the development, initial psychometric validation, and feasibility of the Hospital-to-Home-Health-Transition Quality (H3TQ) Index to identify patient safety risks. METHODS: Development: A multisite, mixed-methods study at 5 HH agencies in rural and urban sites across the United States. Testing: Prospective H3TQ implementation on older adults' hospital-to-HH transitions. Populations Studied: Older adults and caregivers receiving HH services after hospital discharge, and their HH providers (nurses and rehabilitation therapists). RESULTS: The H3TQ is a 12-item count of hospital-to-HH transitions best practices for safety that we developed through more than 180 hours of observations and more than 80 hours of interviews. The H3TQ demonstrated feasibility of use, stability, construct validity, and concurrent validity when tested on 75 transitions. The vast majority (70%) of hospital-to-HH transitions had at least one safety issue, and HH providers identified more patient safety threats than did patients/caregivers. The most frequently identified issues were unsafe home environments (32%), medication issues (29%), incomplete information (27%), and patients' lack of general understanding of care plans (27%). CONCLUSIONS: The H3TQ is a novel measure to assess the quality of hospital-to-HH transitions and proactively identify transitions issues. Patients, caregivers, and HH providers offered valuable perspectives and should be included in safety reporting. Study findings can guide the design of interventions to optimize quality during the high-risk hospital-to-HH transition.

Evaluating the Usability of an Emergency Department After Visit Summary: Staged Heuristic Evaluation.

BACKGROUND: Heuristic evaluations, while commonly used, may inadequately capture the severity of identified usability issues. In the domain of health care, usability issues can pose different levels of risk to patients. Incorporating diverse expertise (eg, clinical and patient) in the heuristic evaluation process can help assess and address potential negative impacts on patient safety that may otherwise go unnoticed. One document that should be highly usable for patients-with the potential to prevent adverse outcomes-is the after visit summary (AVS). The AVS is the document given to a patient upon discharge from the emergency department (ED), which contains instructions on how to manage symptoms, medications, and follow-up care. OBJECTIVE: This study aims to assess a multistage method for integrating diverse expertise (ie, clinical, an older adult care partner, and health IT) with human factors engineering (HFE) expertise in the usability evaluation of the patient-facing ED AVS. METHODS: We conducted a three-staged heuristic evaluation of an ED AVS using heuristics developed for use in evaluating patient-facing documentation. In stage 1, HFE experts reviewed the AVS to identify usability issues. In stage 2, 6 experts of varying expertise (ie, emergency medicine physicians, ED nurses, geriatricians, transitional care nurses, and an older adult care partner) rated each previously identified usability issue on its potential impact on patient comprehension and patient safety. Finally, in stage 3, an IT expert reviewed each usability issue to identify the likelihood of successfully addressing the issue. RESULTS: In stage 1, we identified 60 usability issues that violated a total of 108 heuristics. In stage 2, 18 additional usability issues that violated 27 heuristics were identified by the study experts. Impact ratings ranged from all experts rating the issue as "no impact" to 5 out of 6 experts rating the issue as having a "large negative impact." On average, the older adult care partner representative rated usability issues as being more significant more of the time. In stage 3, 31 usability issues were rated by an IT professional as "impossible to address," 21 as "maybe," and 24 as "can be addressed." CONCLUSIONS: Integrating diverse expertise when evaluating usability is important when patient safety is at stake. The non-HFE experts, included in stage 2 of our evaluation, identified 23% (18/78) of all the usability issues and, depending on their expertise, rated those issues as having differing impacts on patient comprehension and safety. Our findings suggest that, to conduct a comprehensive heuristic evaluation, expertise from all the contexts in which the AVS is used must be considered. Combining those findings with ratings from an IT expert, usability issues can be strategically addressed through redesign. Thus, a 3-staged heuristic evaluation method offers a framework for integrating context-specific expertise efficiently, while providing practical insights to guide human-centered design.

Satisfaction of Older Patients With Emergency Department Care: Psychometric Properties and Construct Validity of the Consumer Emergency Care Satisfaction Scale.

BACKGROUND: Patient satisfaction is an important indicator of quality of care, but its measurement remains challenging. The Consumer Emergency Care Satisfaction Scale (CECSS) was developed to measure patient satisfaction in the emergency department (ED). Although this is a valid and reliable tool, several aspects of the CECSS need to be improved, including the definition, dimension, and scoring of scales. PURPOSE: The purpose of this study was to examine the construct validity of the CECSS and make suggestions on how to improve the tool to measure overall satisfaction with ED care. METHODS: We administered 2 surveys to older adults who presented with a fall to the ED and used electronic health record data to examine construct validity of the CECSS and ceiling effects. RESULTS: Using several criteria, we improved construct validity of the CECSS, reduced ceiling effects, and standardized scoring. CONCLUSION: We addressed several methodological issues with the CECSS and provided recommendations for improvement.

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.

Characterizing barriers to antibiotic stewardship for skin and soft-tissue infections in the emergency department using a systems engineering framework.

Objective: Skin and soft-tissue infections (SSTIs) account for 3% of all emergency department (ED) encounters and are frequently associated with inappropriate antibiotic prescribing. We characterized barriers and facilitators to optimal antibiotic use for SSTIs in the ED using a systems engineering framework and matched them with targeted stewardship interventions. Design and participants: We conducted semistructured interviews with a purposefully selected sample of emergency physicians. Methods: An interview guide was developed using the Systems Engineering Initiative for Patient Safety (SEIPS) framework. Interviews were recorded, transcribed, and analyzed iteratively until conceptual saturation was achieved. Themes were identified using deductive directed content analysis guided by the SEIPS model. Results: We conducted 20 interviews with physicians of varying experience and from different practice settings. Identified barriers to optimal antibiotic prescribing for SSTIs included poor access to follow-up (organization), need for definitive diagnostic tools (tools and technology) and fear over adverse outcomes related to missed infections (person). Identified potential interventions included programs to enhance follow-up care; diagnostic aides (eg, rapid MRSA assays for purulent infections and surface thermal imaging for cellulitis); and shared decision-making tools. Conclusions: Using a systems engineering informed qualitative approach, we successfully characterized barriers and developed targeted antibiotic stewardship interventions for SSTIs managed in the ED work system. The interventions span multiple components of the ED work system and should inform future efforts to improve antibiotic stewardship for SSTIs in this challenging care setting.

Caregiver perceptions of in-home COVID-19 testing for children with medical complexity: a qualitative study.

BACKGROUND: In-home direct antigen rapid testing (DART) plays a major role in COVID-19 mitigation and policy. However, perceptions of DART within high-risk, intellectually impaired child populations are unknown. This lack of research could negatively influence DART uptake and utility among those who stand to benefit most from DART. The purpose of this study was to describe caregivers' perceptions of an in-home COVID-19 DART regimen in children with medical complexity, including the benefits and limitations of DART use. METHODS: This qualitative study was a subproject of the NIH Rapid Acceleration of Diagnostics Underserved Populations research program at the University of Wisconsin. We combined survey data and the thematic analysis of semi-structured interview data to understand caregivers' perceptions of in-home COVID-19 testing and motivators to perform testing. Caregivers of children with medical complexity were recruited from the Pediatric Complex Care Program at the University of Wisconsin (PCCP). Data were collected between May and August 2021. RESULTS: Among n = 20 caregivers, 16/20 (80%) of their children had neurologic conditions and 12/20 (60%) used home oxygen. Survey data revealed that the largest caregiver motivators to test their child were to get early treatment if positive (18/20 [90%] of respondents agreed) and to let the child's school know if the child was safe to attend (17/20 [85%] agreed). Demotivators to testing included that the child could still get COVID-19 later (7/20 [35%] agreed), and the need for officials to reach out to close contacts (6/20 [30%] agreed). From interview data, four overarching themes described perceptions of in-home COVID-19 testing: Caregivers perceived DART on a spectrum of 1) benign to traumatic and 2) simple to complex. Caregivers varied in the 3) extent to which DART contributed to their peace of mind and 4) implications of test results for their child. CONCLUSIONS: Although participants often described DART as easy to administer and contributing to peace of mind, they also faced critical challenges and limitations using DART. Future research should investigate how to minimize the complexity of DART within high-risk populations, while leveraging DART to facilitate safe school attendance for children with medical complexity and reduce caregiver burden.

Correction: A Web-Based Platform (CareVirtue) to Support Caregivers of People Living With Alzheimer Disease and Related Dementias: Mixed Methods Feasibility Study.

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"It made me feel like I wasn't alone in the darkness": exploring dementia care network communication and coordination through a digital health platform.

OBJECTIVE: To explore the use of a shared communication and coordination platform-the CareVirtue journal feature-for care networks of people living with Alzheimer's disease and related dementias to inform the design of care network support technologies. MATERIALS AND METHODS: In the primary study, care networks comprised the primary caregiver and other caregivers they invited to participate (eg, family members, in-home aides) used CareVirtue, for 60 days followed by a semistructured interview to explore primary caregivers' perceptions of usefulness. This secondary analysis focused on use of the shared journal feature of CareVirtue, which allowed care networks to communicate through posts that were shared with the network and to which network members could respond. Journal posts were analyzed using a deductive/inductive content analysis to categorize information behavior. We also conducted a thematic analysis of the interviews to identify primary caregivers' perceptions of the journal's usefulness. RESULTS: Care networks used the journal for: (1) information acquisition, (2) information sharing, (3) strategy development, and (4) information feedback. Thematic analysis revealed that caregivers felt the journal was useful at the individual, care network, and relational levels and that journal integration was influenced by care network structure and relationships. DISCUSSION: Care networks used the journal to document, share, and acquire information; co-create strategies; and provide support. The usefulness of this shared communication and coordination platform included individual and care network level benefits. CONCLUSION: These findings point to the importance of caregiver-centered technologies that support both the individual primary caregiver and the care network.

A Web-Based Platform (CareVirtue) to Support Caregivers of People Living With Alzheimer Disease and Related Dementias: Mixed Methods Feasibility Study.

BACKGROUND: People living with Alzheimer disease and related dementias (ADRD) require prolonged and complex care that is primarily managed by informal caregivers who face significant unmet needs regarding support for communicating and coordinating across their informal care network. To address this unmet need, we developed CareVirtue, which provides (1) the ability to invite care network members; (2) a care guide detailing the care plan; (3) a journal where care network members can document, communicate, and coordinate; (4) a shared calendar; and (5) vetted geolocated caregiver resources. OBJECTIVE: This study aims to evaluate CareVirtue's feasibility based on: (1) Who used CareVirtue? (2) How did caregivers use CareVirtue? (3) How did caregivers perceive the acceptability of CareVirtue? (4) What factors were associated with CareVirtue use? METHODS: We conducted a feasibility study with 51 care networks over a period of 8 weeks and used a mixed methods approach that included both quantitative CareVirtue usage data and semistructured interviews. RESULTS: Care networks ranged from 1 to 8 members. Primary caregivers were predominantly female (38/51, 75%), White (44/51, 86%), married (37/51, 73%), college educated (36/51, 71%), and were, on average, 60.3 (SD 9.8) years of age, with 18% (9/51) living in a rural area. CareVirtue usage varied along 2 axes (total usage and type of usage), with heterogeneity in how the most engaged care networks interacted with CareVirtue. Interviews identified a range of ways CareVirtue was useful, including practically, organizationally, and emotionally. On the Behavioral Intention Scale, 72% (26/36) of primary caregivers reported an average score of at least 3, indicating an above average intention to use. The average was 81.8 (SD 12.8) for the System Usability Scale score, indicating "good" usability, and 3.4 (SD 1.0) for perceived usefulness, suggesting above average usefulness. The average confidence score increased significantly over the study duration from 7.8 in week 2 to 8.9 in week 7 (P=.005; r=0.91, 95% CI 0.84-0.95). The following sociodemographic characteristics were associated with posting in the journal: retired (mean 59.5 posts for retired caregivers and mean 16.9 for nonretired caregivers), income (mean 13 posts for those reporting >US $100K and mean 55.4 for those reporting