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.

Pediatric Resident Well-being: A Group Concept Mapping Study.

OBJECTIVE: Pediatric residency programs invest substantial resources in supporting resident well-being. However, no pediatric resident well-being conceptual model exists to guide interventions. This study aimed to understand how a diverse stakeholder sample conceptualized well-being. METHODS: We used group concept mapping methodology. We sent a brainstorming survey to pediatric residents and program leaders at 24 US residencies with the prompt, "The experience of well-being for resident physicians includes…" Participants at 4 residencies sorted well-being ideas conceptually and rated idea importance. We performed multidimensional scaling and hierarchical cluster analysis to develop cluster maps. Using participant feedback and a consensus-driven process, we determined best cluster representation. We used pattern matching to compare domain ratings between subgroups. RESULTS: In brainstorming, 136 residents and 22 program leaders from 22 residency programs generated 97 unique ideas. Ideas were sorted and rated by 33 residents, 14 program leaders. Eight domains aligning with 4 resident roles were identified. Domains were: 1) positive, safe, and diverse culture; 2) unity and connection; 3) professional fulfillment and mindset; 4) personal health and life satisfaction; 5) professional development and recognition; 6) schedule protections and downtime; 7) work systems and benefits; 8) proactive and compassionate leadership. Domains aligned with the following roles: 1) individual, 2) colleague, 3) employee, 4) emerging pediatrician. Residents placed higher value on schedule protections and downtime than program leaders, P < .05. CONCLUSIONS: Pediatric resident well-being may be conceptualized as inter-related domains corresponding with various resident roles. Participants aligned on many well-being priorities but differed regarding work schedules.

Perception of Physicians' Notes Among Parents of Different Health Literacy Levels.

OBJECTIVES: To explore the benefits and challenges of accessing physicians' notes during pediatric hospitalization across parents of different health literacy levels. METHODS: For this secondary analysis, we used semi-structured interviews conducted with 28 parents on their impressions of having access to their child's care team notes on a bedside table. Three researchers used thematic analysis to develop a codebook, coded interview data, and identified themes. Parent interviews and respective themes were then dichotomized into proficient or limited health literacy groups and compared. RESULTS: Nine themes were identified in this secondary analysis: 6 benefits and 3 challenges. All parents identified more benefits than challenges, including that the notes served as a recap of information and memory aid and increased autonomy, empowerment, and advocacy for their child. Both groups disliked receiving bad news in notes before face-to-face communication. Parents with proficient literacy reported that notes allowed them to check information accuracy, but that notes may not be as beneficial for parents with lower health literacy. Parents with limited literacy uniquely identified limited comprehension of medical terms but indicated that notes facilitated their understanding of their child's condition, increased their appreciation for their health care team, and decreased their anxiety, stress, and worry. CONCLUSIONS: Parents with limited health literacy uniquely reported that notes improved their understanding of their child's care and decreased (rather than increased) worry. Reducing medical terminology may be one equitable way to increase note accessibility for parents across the health literacy spectrum.

Eight Domains of Pediatrician Wellness: A Stakeholder Informed Model.

BACKGROUND: Physician wellness is important to health care systems and quality patient care. There has been limited research clarifying the physician wellness construct. We aimed to develop a stakeholder-informed model of pediatrician wellness. METHODS: We performed a group concept mapping (GCM) study to create a model of pediatrician wellness. We followed the four main steps of GCM and recruited pediatricians at multiple sites and on social media. During brainstorming, pediatricians individually responded to a prompt to generate ideas describing the concept of pediatrician wellness. Second, pediatricians sorted the list of brainstormed ideas into conceptually similar groups and rated them on importance. Sorted data were analyzed to create maps showing each idea as a point, with lines around groups of points to create clusters of wellness. Mean importance scores for each cluster were calculated and compared using pattern match. RESULTS: Pediatricians in this study identified eight clusters of wellness: 1) Experiencing belonging and support at work, 2) Alignment in my purpose, my work, and my legacy, 3) Feelings of confidence and fulfillment at work, 4) Skills and mindset for emotional well-being, 5) Harmony in personal, professional, and community life, 6) Time and resources to support holistic sense of self, 7) Work boundaries and flexibility, and 8) Organizational culture of inclusion and trust. There were no significant differences in mean cluster rating score; the highest rated cluster was Harmony in personal, professional and community life (3.62). CONCLUSION: Pediatricians identified eight domains of wellness, spanning professional and personal life, work, and individual factors.

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.

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.

Developing a Sustainable Care Delivery Payment Model for Children With Medical Complexity.

Children with medical complexity (CMC) are a small but growing population representing <1% of all children while accounting for >30% of childhood health care expenditure. Complex care is a relatively new discipline that has emerged with goals of improving CMC care, optimizing CMC family function, and reducing health care costs. The provision of care coordination services is a major function of most complex care programs. Unfortunately, most complex care programs struggle to achieve financial sustainability in a predominately fee-for-service environment. The article describes how 2 programs in Wisconsin worked with their state Medicaid payer through a Centers for Medicare and Medicaid Services Health Care Innovation Award to develop a sustainable complex care payment model, and the value the payment model is currently bringing to stakeholders. Key elements of the process included: Developing a relationship between payer and clinicians that allowed for an understanding of each's viewpoint, use of an accepted clinical service model, and an effort to measure cost of care for the service provided supported by time-study methodology.

Barriers to and facilitators of a just-in-time adaptive intervention for respiratory illness in cerebral palsy: a qualitative study.

OBJECTIVE: To understand caregiver, healthcare professional and national expert perspectives on implementation of a just-in-time adaptive intervention, RE-PACT (Respiratory Exacerbation-Plans for Action and Care Transitions) to prevent respiratory crises in severe cerebral palsy. DESIGN: Qualitative research study. SETTING: Paediatric complex care programmes at two academic medical institutions. PARTICIPANTS: A total of n=4 focus groups were conducted with caregivers of children with severe cerebral palsy and chronic respiratory illness, n=4 with healthcare professionals, and n=1 with national experts. METHODS: Participants viewed a video summarising RE-PACT, which includes action planning, mobile health surveillance of parent confidence to avoid hospitalisation and rapid clinical response at times of low confidence. Moderated discussion elicited challenges and benefits of RE-PACT's design, and inductive thematic analysis elicited implementation barriers and facilitators. RESULTS: Of the 19 caregivers recruited, nearly half reported at least one hospitalisation for their child in the prior year. Healthcare professionals and national experts (n=26) included physicians, nurses, respiratory therapists, social workers and researchers. Four overarching themes and their barriers/facilitators emphasised the importance of design and interpersonal relationships balanced against health system infrastructure constraints. Intervention usefulness in crisis scenarios relies on designing action plans for intuitiveness and accuracy, and mobile health surveillance tools for integration into daily life. Trust, knowledge, empathy and adequate clinician capacity are essential components of clinical responder-caregiver relationships. CONCLUSIONS: RE-PACT's identified barriers are addressable. Just-in-time adaptive interventions for cerebral palsy appear well-suited to address families' need to tailor intervention content to levels of experience, preference and competing demands.

Common Data Element Collection in Underserved School Communities: Challenges and Recommendations.

OBJECTIVES: To provide recommendations for future common data element (CDE) development and collection that increases community partnership, harmonizes data interpretation, and continues to reduce barriers of mistrust between researchers and underserved communities. METHODS: We conducted a cross-sectional qualitative and quantitative evaluation of mandatory CDE collection among Rapid Acceleration of Diagnostics-Underserved Populations Return to School project teams with various priority populations and geographic locations in the United States to: (1) compare racial and ethnic representativeness of participants completing CDE questions relative to participants enrolled in project-level testing initiatives and (2) identify the amount of missing CDE data by CDE domain. Additionally, we conducted analyses stratified by aim-level variables characterizing CDE collection strategies. RESULTS: There were 15 study aims reported across the 13 participating Return to School projects, of which 7 (47%) were structured so that CDEs were fully uncoupled from the testing initiative, 4 (27%) were fully coupled, and 4 (27%) were partially coupled. In 9 (60%) study aims, participant incentives were provided in the form of monetary compensation. Most project teams modified CDE questions (8/13; 62%) to fit their population. Across all 13 projects, there was minimal variation in the racial and ethnic distribution of CDE survey participants from those who participated in testing; however, fully uncoupling CDE questions from testing increased the proportion of Black and Hispanic individuals participating in both initiatives. CONCLUSIONS: Collaboration with underrepresented populations from the early study design process may improve interest and participation in CDE collection efforts.

Recommendations for SARS-CoV-2 Testing in Children With Disabilities and Medical Complexity.

Schools provide important services that cannot be provided virtually to children with medical complexity and children with intellectual and developmental disabilities, yet these children are among the most at risk from coronavirus disease 2019 (COVID-19). To keep schools open for children with medical complexity and/or intellectual and developmental disabilities during the COVID-19 pandemic, we implemented severe acute respiratory syndrome coronavirus 2 testing at 3 sites across the United States. We evaluated testing strategies for staff and students at each site, including specimen source (nasopharyngeal or saliva), test type (polymerase chain reaction or rapid antigen), and frequency and type (screening versus exposure/symptomatic) of testing provided. Among the greatest barriers to severe acute respiratory syndrome coronavirus 2 testing in these schools was the engagement of caregivers and challenges navigating legal guardianship for consenting adult students. Additionally, variability in testing strategies nationally and in the community, as well as surges in viral transmission across the United States during the course of the pandemic, led to testing hesitancy and variable participation rates. Essential to the successful implementation of testing programs is building a trusted relationship with school administrators and guardians. Leveraging our experiences with COVID-19 and forming lasting school partnerships can help keep schools for vulnerable children safe in future pandemics.

School Attendance Decisions for Children With Medical Complexity During COVID-19.

OBJECTIVE: School attendance by children with medical complexity (CMC) may be influenced by parent perceptions of their child's risk for coronavirus disease 2019 (COVID-19). The authors of this study aimed to quantify in-person school attendance and identify attendance predictors. METHODS: From June to August 2021, surveys were collected from English- and Spanish-speaking parents of children aged 5 to 17 years with ≥1 complex chronic condition who received care at an academic tertiary children's hospital in the Midwestern United States and who attended school prepandemic. The outcome, in-person attendance, was defined dichotomously as any in-person attendance versus none. We evaluated parent-perceived school attendance benefits, barriers, motivation, and cues, COVID-19 severity and susceptibility using survey items derived from the health belief model (HBM). Latent HBM constructs were estimated with exploratory factor analysis. Associations between the outcome and the HBM were evaluated with multivariable logistic regression and structural equation models. RESULTS: Among 1330 families (response rate 45%), 19% of CMC were not attending in-person school. Few demographic and clinical variables predicted school attendance. In adjusted models, family-perceived barriers, motivation, and cues predicted in-person attendance, whereas benefits, susceptibility, and severity did not. The predicted probability (95% confidence interval) of attendance ranged from 80% (70% to 87%) for high perceived barriers to 99% (95% to 99%) for low perceived barriers. Younger age (P <.01) and previous COVID-19 infection (P = .02) also predicted school attendance. CONCLUSIONS: Overall, 1 in 5 CMC did not attend school at the end of the 2020 to 2021 academic year. Family perceptions of schools' mitigation policies and encouragement of attendance may be promising avenues to address this disparity.

Domains of professional fulfillment for pediatric hospital medicine: A concept mapping study.

BACKGROUND: We know little about how pediatric hospital medicine (PHM) physicians conceptualize their professional fulfillment (PF). The objective of this study was to determine how PHM physicians conceptualize PF. OBJECTIVE: The objective of this study was to determine how PHM physicians conceptualize PF. METHODS: We performed a single-site group concept mapping (GCM) study to create a stakeholder-informed model of PHM PF. We followed established GCM steps. For brainstorming, PHM physicians responded to a prompt to generate ideas describing the concept of PHM PF. Next, PHM physicians sorted the ideas based on conceptual relatedness and ranked them on importance. Responses were analyzed to create point cluster maps where each idea represented one point, and point proximity illustrated how often ideas were sorted together. Using an iterative and consensus-driven approach, we selected a cluster map best representing the ideas. Mean rating scores for all the items in each cluster were calculated. RESULTS: Sixteen PHM physicians identified 90 unique ideas related to PHM PF. The final cluster map described nine domains for PHM PF: (1) work personal-fit, (2) people-centered climate, (3) divisional cohesion and collaboration, (4) supportive and growth-oriented environment, (5) feeling valued and respected, (6) confidence, contribution, and credibility, (7) meaningful teaching and mentoring, (8) meaningful clinical work, and (9) structures to facilitate effective patient care. The domains with the highest and lowest importance ratings were divisional cohesion and collaboration and meaningful teaching and mentoring. CONCLUSION: Domains of PF for PHM physicians extend beyond existing PF models, particularly the importance of teaching and mentoring.

Interventions in the Home and Community for Medically Complex Children: A Systematic Review.

CONTEXT: Most care occurs in home and community settings; however, the best approaches to improve CMC health are poorly understood. OBJECTIVE: We sought to summarize evidence from interventions in the home and community to improve health for children with medical complexity (CMC) using comprehensive conceptions of CMC health. DATA SOURCES: PubMed, CINAHL, Scopus, and Cochrane databases. STUDY SELECTION: Included studies evaluated interventions for CMC caregivers in home or community settings and evaluated at least 1 outcome in 10 domains of CMC health. DATA EXTRACTION: Data were extracted on participant characteristics, intervention activities, and outcomes. Interventions were categorized thematically into strategies, with results summarized by effects on outcomes within each health domain. RESULTS: The 25 included interventions used 5 strategies: intensive caregiver education (n = 18), support groups (n = 3), crisis simulation (n = 2), mobile health tracking (n = 1), and general education (n = 1). Substantial variation existed in the extent to which any outcome domain was studied (range 0-22 studies per domain). Interventions addressing 4 domains showed consistent improvement: support group and mobile health tracking improved long-term child and caregiver self-sufficiency; mobile health tracking improved family-centered care; intensive caregiver education and support groups improved community system supports. Three domains (basic needs, inclusive education, patient-centered medical home) were not studied. LIMITATIONS: Risk of bias was moderate due primarily to limited controlled experimental designs and heterogeneous population and outcome definitions. CONCLUSIONS: Interventions that improve CMC health exist; however, current studies focus on limited segments of the 10 domains framework. Consensus outcome measures for CMC health are needed.

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.

Prevalence of and Spending on Ear, Nose, Throat, and Respiratory Infections Among Children With Chronic Complex Conditions.

OBJECTIVE: Ear, nose, throat, and respiratory infections (ENTRI) may affect children with complex chronic conditions (CCC) differently than their peers. We compared ENTRI prevalence and spending in children with and without CCCs. METHODS: Retrospective analysis of 3,880,456 children ages 0-to-18 years enrolled in 9 US state Medicaid programs in 2018 contained in the IBM Watson Marketscan Database. Type and number of CCCs were distinguished with Feudtner's system. ENTRI prevalence, defined as ≥1 healthcare encounters for ENTRI, and Medicaid spending on ENTRI were compared by CCC using chi-square tests and logistic regression. RESULTS: ENTRIs were greater in children with vs. without a CCC (57.7% vs 43.5% [P < .001]). Children with a CCC (5.5%, n = 213,425) accounted for nearly one-fourth ($145.8 million [US]) of total spending on ENTRI. Aside from throat and sinus infection, ENTRI prevalence increased with number of CCCs (P < .001). For example, as number of CCCs increased from zero to ≥3, lower-airway infection increased from 12.5% to 37.5%, P < .001 (OR 4.10; 95% CI 3.95-4.26). ENTRI spending attributable to inpatient care increased from 9.7% to 92.8% (P < .001) as the number of CCCs increased from zero to ≥3. CONCLUSION: Most children with a CCC pursued care for ENTRI in 2018 and these children accounted for a disproportionate share of ENTRI spending. Children with multiple CCCs had a high prevalence of lower-airway infection; most of their ENTRI spending was for inpatient care. Providers can use these findings to counsel patients and families and to inform future investigations on how best to manage ENTRI in children with CCCs.