Secondary Data Analysis: Using existing data to answer new questions.

INTRODUCTION: Secondary data analysis is a cost-effective, accessible, and efficient means of utilizing existing data to answer new research questions. METHOD: The manuscript provides an overview of the secondary data analysis process, as well as benefits and limitations inherent in the research method. RESULTS: An exemplar of pediatric focused research using a publicly available dataset is presented to facilitate understanding of the process. DISCUSSION: Novice and experienced researchers benefit from exploring the quantitative and qualitative secondary data analysis options available.

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.

Family experiences reported by healthcare worker parents during the COVID-19 pandemic.

PURPOSE: Parents, who were working as essential frontline healthcare workers experienced unique stressors during the COVID-19 pandemic including disruption of regular routines, long lapses away from family, extreme work stress and subsequent difficulty in compartmentalizing work-related concerns when at home. The purpose of this study was to assess COVID-19 exposure and impact of frontline healthcare workers who are parents. DESIGN & METHODS: This study quantitatively assessed the COVID-19 exposure and impact and qualitatively explored perceptions of parents of children 9 to 17 years of age, who were also frontline healthcare workers. RESULTS: Participants (N = 79) using the COVID-19 Exposure and Family Impact Survey (CEFIS) reported exposure mean scores of 10.03 (SD = 2.63); and impact scores mean scores of 3.18 (SD = 0.46). Thematic analysis identified four themes, each with 2 subthemes: 1) family stressors increased (e.g., concerns about health and safety, losses of lifestyle patterns); 2) changes in children's health and well-being (e.g., isolation from family and friends, mental health problems); 3) virtual school difficulties (e.g., parent and student challenges, home school option); 4) skill building opportunities (e.g., enhanced emotional connections, increased family activities). CONCLUSION: The CHAMPS Family Health Study suggests that families of essential workers are especially vulnerable to the effect of COVID-19, as are those families of essential workers who include child/ren with special health care needs. PRACTICE IMPLICATIONS: Preparation for future emergencies requires strategies to mitigate consequences and promote well-being. These results highlight the need for supportive approaches to decrease the negative consequences of stress and to augment skills for family connection and cooperation.

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.

Physician Work-Personal Intersection: A Scoping Review of Terms, Definitions, and Measures.

PURPOSE: A substantial body of evidence describes the multidimensional relationship between the intersection of physicians' work and personal lives and health care quality and costs, workforce sustainability, and workplace safety culture. However, there is no clear consensus on the terms, definitions, or measures used in physician work-personal intersection (WPI) research. In this scoping review, the authors aimed to describe the terms and definitions used by researchers to describe physician WPI, summarize the measurement tools used, and formulate a conceptual model of WPI that can inform future research. METHOD: The authors searched PubMed, CINAHL, Scopus, and Web of Science for studies that investigated U.S. practicing physicians' WPI and measured WPI as an outcome from January 1990 to March 2022. The authors applied thematic analysis to all WPI terms, definitions, and survey questions or prompts in the included studies to create a conceptual model of physician WPI. RESULTS: Ultimately, 102 studies were included in the final analysis. The most commonly used WPI terms were work-life balance, work-life integration, and work-home or work-life conflict(s). There was no consistency in the definition of any terms across studies. There was heterogeneity in the way WPI was measured, and only 8 (7.8%) studies used a validated measurement tool. The authors identified 6 key driver domains of WPI: work and personal demands; colleague and institutional support and resources; personal identity, roles, health, and values; work schedule and flexibility; partner and family support; and personal and professional strategies. CONCLUSIONS: The authors found significant variability in the terms, definitions, and measures used to study physician WPI. They offer a conceptual model of the WPI construct that can be used to more consistently study physician WPI in the future. Future work should further investigate the validity of this model and generate consensus around WPI terms, definitions, and measures.

Adolescent Access to Clinicians' Notes: Adolescent, Parent, and Clinician Perspectives.

PURPOSE: In 2021, federal guidelines mandated that health-care organizations share clinicians' notes with patients to increase information transparency. While findings indicate advantages for adult patients, less is known about note-sharing from the viewpoint of adolescents. This study aims to identify adolescent, parent, and clinician perspectives on the anticipated benefits and concerns of giving adolescents access to clinicians' notes and strategies to support note-sharing in this population. METHODS: We conducted six focus groups with adolescents, parents, and clinicians at a children's hospital from May to October 2021. A semistructured facilitator guide captured participant perspectives of note-sharing benefits, concerns, and strategies. Two researchers independently coded and analyzed transcript data using thematic analysis; a third researcher reconciled discrepancies. RESULTS: 38 stakeholders (17 adolescents, 10 parents, and 11 clinicians) described four benefits, three concerns, and four implementation strategies regarding adolescent note-sharing. Potential benefits included adolescents using notes to remember and reinforce the visit, gaining knowledge about their health, strengthening the adolescent-clinician relationship, and increasing agency in health care decisions. Concerns included notes leading to a breach in confidentiality, causing negative emotions, and becoming less useful for clinicians. Strategies included making note-sharing more secure, optimizing note layout and content, setting clear expectations, and having a portion of the note for clinician use only. DISCUSSION: Stakeholders suggest multiple strategies to optimize the implementation of note-sharing to support adolescent patients, parents, and clinicians as hospitals work to comply with federal regulations. These strategies may reinforce the potential benefits and mitigate the challenges of sharing notes with adolescent patients.

Human Factors Engineering for the Pediatric Hospitalist.

As pediatrics hospitalists, we care for a diverse population of hospitalized children with increasing acuity and complexity in large, multidisciplinary medical teams. In this Method/ology paper, we summarize how human factors engineering (HFE) can provide a framework and tools to help us understand and improve our complex care processes and resulting outcomes. First, we define and discuss the 3 domains of HFE (ie, physical, cognitive, and organizational) and offer examples of HFE's application to pediatric hospital medicine. Next, we highlight an HFE-based framework, the Systems Engineering for Patient Safety model, which conceptualizes how our work system shapes health care processes and outcomes. We provide tools for leveraging this model to better understand the context in which our work is done, which, consequently, informs how we design our systems and processes to improve the quality and safety of care. Finally, we outline the basics of human-centered design and highlight a case study of a project completed in a pediatric hospital setting focused on making rounds more family-centered. In addition, we provide resources for those interested in learning more about HFE.

Work system barriers and facilitators of a team health information technology.

Designing health IT aimed at supporting team-based care and improving patient safety is difficult. This requires a work system (i.e., SEIPS) evaluation of the technology by care team members. This study aimed to identify work system barriers and facilitators to the use of a team health IT that supports care transitions for pediatric trauma patients. We conducted an analysis on 36 interviews - representing 12 roles - collected from a scenario-based evaluation of T3. We identified eight dimensions with both barriers and facilitators in all five work system elements: person (experience), task (task performance, workload/efficiency), technology (usability, specific features of T3), environment (space, location), and organization (communication/coordination). Designing technology that meets every role's needs is challenging; in particular, when trade-offs need to be managed, e.g., additional workload for one role or divergent perspectives regarding specific features. Our results confirm the usefulness of a continuous work system approach to technology design and implementation.

In their own words: Safety and quality perspectives from families of hospitalized children with medical complexity.

BACKGROUND: Children with medical complexity (CMC) experience adverse events due to multiorgan impairment, frequent hospitalizations, subspecialty care, and dependence on multiple medications/equipment. Their families are well-versed in care and can help identify safety/quality gaps to inform improvements. Although previous studies have shown families identify important safety/quality gaps in hospitals, studies of inpatient safety/quality experience of CMC and their families are limited. To address this gap and identify otherwise unrecognized, family-prioritized areas for improving safety/quality of CMC, we conducted a secondary qualitative analysis of safety reporting surveys among families of CMC. OBJECTIVE: Explore safety reports from families of hospitalized CMC to identify areas to improve safety/quality. DESIGNS, SETTINGS AND PARTICIPANTS: We analyzed free-text responses from predischarge safety reporting surveys administered to families of CMC at a quaternary children's hospital from April 2018 to November 2020. Using a qualitative descriptive approach, we categorized responses into standard clinical categories. Three team members inductively generated an initial codebook to apply iteratively to responses. Reviewers coded responses collaboratively, resolved discrepancies through consensus, and generated themes. MAIN OUTCOME AND MEASURES: Outcomes: family-reported areas of safety/quality improvement. MEASURES: pre-discharge family surveys. RESULTS: Two hundred and eight/two hundred and thirty-seven (88%) families completed surveys; 83 families offered 138 free-text safety responses about medications, feeds, cares, and other categories. Themes included unmet expectations of hospital care/environment, lack of consistency, provider-patient communication lapses, families' expertise about care, and the value of transparency. CONCLUSION: To improve care of CMC and their families, hospitals can manage expectations about hospital limitations, improve consistency of care/communication, acknowledge family expertise, and recognize that family-observed quality concerns can have safety implications. Soliciting family input can help hospitals improve care in meaningful, otherwise unrecognized ways.

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.

Diagnostic Reasoning Competency and Accuracy by Nurse Practitioner Students Following the Use of Structured Reflection in Simulation: A Mixed-Methods Experiment.

AIM: The aim of this study was to examine the effect of structured reflection used during a simulated patient's diagnostic workup on diagnostic reasoning competency and accuracy and explore participants' cognitive bias experience and perceived utility of structured reflection. BACKGROUND: Reasoning flaws may lead to diagnostic errors. Medical learners who used structured reflection demonstrated improved diagnosis accuracy. METHOD: Embedded mixed-methods experiment examined diagnostic reasoning competency and accuracy of nurse practitioner students who did and did not use structured reflection. Cognitive bias experience and perceptions of structured reflection's utility were explored. RESULTS: Diagnostic Reasoning Assessment mean competency scores and categories were not changed. Accuracy trended toward improvement with structured reflection. The theme, diagnostic verification, prompted diagnosis change by both structured reflection users and control participants. CONCLUSION: Despite no changes in quantitative outcomes, explicit users of structured reflection believed that this strategy is helpful to their reasoning, and control participants used the strategy's components with the same noted benefits.

Parent Experiences with the Process of Sharing Inpatient Safety Concerns for Children with Medical Complexity: A Qualitative Analysis.

OBJECTIVE: To describe the process of identifying and reporting inpatient safety concerns from the perspective of parents of children with medical complexity (CMC). METHODS: We conducted a secondary analysis of qualitative data from semi-structured interviews with 31 English and Spanish-speaking parents of CMC at two tertiary children's hospitals. Interviews lasted 45-60 minutes and were audio-recorded, translated, and transcribed. Three researchers inductively and deductively coded transcripts using an iteratively refined codebook with validation by a fourth researcher. Thematic analysis was used to develop a conceptual model of the process of inpatient parent safety reporting. RESULTS: We identified four steps illustrating the process of inpatient parent safety concern reporting 1) parent recognizing concern, 2) parent reporting concern, 3) staff/hospital response continuum, and 4) parent feelings of validation/invalidation. Many parents endorsed that they were the first to catch a safety concern and were identified as unique reporters of safety information. Parents typically described reporting their concerns verbally and in real-time to the person they felt could quickly remedy the situation. There was a spectrum of validation. Some parents reported their concerns were not acknowledged and addressed, which led them to feel overlooked, disregarded, or judged. Others reported their concerns were acknowledged and addressed, resulting in parents feeling heard and seen and often leading to changes in clinical care. CONCLUSIONS: Parents described a multi-step process of reporting safety concerns during hospitalization and a spectrum of staff response and validation. These findings can inform family-centered interventions that support safety concern reporting in the inpatient setting.

ADAPTATION AND TESTING OF THE DEVELOPMENTAL DISABILITY ATTITUDES IN NURSING CARE INSTRUMENT.

Background and Purpose: Individuals with developmental disability (DD) often experience poor health outcomes, potentiated by healthcare inequities. Nurses have the potential to reduce these inequities through the quality of care provided. The quality of care provided by nursing students, the future generation of nurses, is affected by the attitudes of their clinical nursing faculty. The purpose of this study was to adapt and test an instrument to specifically measure the attitudes of clinical nursing faculty toward providing care to people with DD. Methods: The Disability Attitudes in Health Care (DAHC) instrument was adapted to create the new Developmental Disability Attitudes in Nursing Care (DDANC) instrument. Results: Content experts reviewed the DDANC for content validity (CVI = 0.88), followed by testing for internal consistency reliability (Cronbach's alpha = 0.7). The study respondents had overall positive attitudes toward the care of people with DD. Conclusions: The DDANC is an acceptably valid and reliable instrument to assess attitudes of clinical nursing faculty toward providing care to people with DD.

A test of differential susceptibility in behavior trajectories of preterm infants from preschool to adulthood.

Preterm birth predisposes children to internalizing and externalizing behaviors that may persist into adolescence resulting in adult mental health conditions. Social and caregiving contexts, particularly for vulnerable infants born preterm, influence long-term outcomes, but mechanisms are not clearly understood. Healthcare teams caring for those born preterm face difficulty predicting who will be most affected by risk, who will most benefit, and the optimal timing of intervention. Differential susceptibility theory offers an alternative to the traditional risk-only assessments and theories by positing that individuals may be more, or less, susceptible to environmental influences. A sample of preterm- and term-born infants were followed from birth to 23 years of age. Mixed model repeated measures analyses of internalizing and externalizing behaviors were utilized for the comparison groups (N = 214; observations = 1070). Environmental contexts were indexed as proximal protection (low, moderate, high) and medical risk (low, moderate, high). Personal characteristic covariates of sex, race, socioeconomic status, and cognition were modeled. Internalizing behavior trajectories varied significantly over time. Early proximal protective environments conferred a sustained positive influence on behaviors. There is partial support for differential susceptibility theory suggesting that prematurity, as a malleability characteristic enables absorption of both the positive and negative influences of the environment, with greater intensity that those without malleability. The current analyses suggest lasting effects of the preschool age proximal environment on internalizing and externalizing behaviors in young adulthood for those born preterm. Understanding these nuances may aid healthcare professionals in the promotion and timing of interventions to support the child and family. The current manuscript reflects ongoing analyses of longitudinal data. No patient or public contribution to the analyses were required for testing the differential susceptibility theory. The authors would solicit patient or public contribution when implementing practice or policy changes based on the results.

Parent Perspectives on Sharing Pediatric Hospitalization Clinical Notes.

BACKGROUND AND OBJECTIVES: Federal guidelines mandate that hospitals provide patients and caregivers with free, online access to their physician's clinical notes. This study sought to identify parent perceptions of the benefits and challenges of real-time note access during their child's hospitalization and strategies to optimize note-sharing at the bedside. METHODS: This qualitative study was conducted with parents of children aged <12 years admitted to a pediatric hospitalist service in April 2019. Parents were given access to their child's admission and daily progress notes on a bedside tablet (iPad), and interviewed upon discharge. In-depth, 60-minute interviews were audio-recorded and transcribed. Two researchers developed and refined a codebook and coded data inductively and deductively with validation by a third researcher. Thematic analysis was used to identify emergent themes. RESULTS: The 28 interviewed parents described 6 benefits of having note access, which: provided a recap and improved their knowledge about their child's care plan, enhanced communication, facilitated empowerment, increased autonomy, and incited positive emotions. Potential challenges included that notes: caused confusion, hindered communication with the health care team, highlighted problems with note content, and could incite negative emotions. Parents recommended 4 strategies to support sharing: provide preemptive communication about expectations, optimize the note release process, consider parent-friendly note template modifications, and offer informational resources for parents. CONCLUSIONS: Findings provide a framework for operationalizing note-sharing with parents during hospitalization. These results have important implications for hospitals working to comply with federal regulations and researchers assessing the effects of increased information transparency in the inpatient setting.

Gender Difference in Teaching Evaluation Scores of Pediatric Faculty.

OBJECTIVE: To evaluate associations between faculty gender and milestone-based teaching assessment scores assigned by residents. METHODS: We performed a retrospective cohort study of milestone-based clinical teaching assessments of pediatric faculty completed by pediatric residents at a mid-sized residency program from July 2016 to June 2019. Assessments included 3 domains (Clinical Interactions, Teaching Skills, Role Modeling/Professionalism) comprised of a total of 11 sub-competency items. We used multilevel logistic regression accounting for repeat measures and clustering to evaluate associations between faculty gender and assessment scores in the 1) top quartile, 2) bottom quartile, or 3) top-box (highest score). Findings were adjusted for faculty rank and academic track, and resident year and gender. RESULTS: Over 3 years, 2889 assessments of 104 faculty were performed by 91 residents. Between assessments of women and men faculty, there were no significant differences in the odds of receiving a score in the top quartile for the 3 domains (Clinical aOR 0.99, P = .86; Teaching aOR 0.99, P = .93; Role Modeling aOR 0.87, P = .089). However, assessments of women were more likely to receive a score in the bottom quartile in both Teaching (aOR 1.23, P = .019) and Role Modeling (aOR 1.26, P = .008). Assessments of women also had lower odds of receiving the highest score in 6 of 11 sub-competencies. CONCLUSION: Results suggest that gender bias may play a role in resident assessments of pediatric faculty. Future studies are needed to determine if findings are replicated in other settings and to identify opportunities to reduce the gender gap in pediatric academic medicine.

Differential Susceptibility: An Explanation for Variability in Life Course Health and Developmental Outcomes.

Differential susceptibility theory posits that some individuals, with specific characteristics, are more, or less susceptible than others, to both adverse and beneficial environmental influences. It offers a perspective for understanding the directional trajectories across the life course affected by daily context and individual characteristics, in order to identify influential components. The aim of this article is to describe differential susceptibility theory, critically evaluate research findings in which the theory is tested, and consider implications of differential susceptibility theory as a theoretical framework for nursing science. Preterm birth trajectories and outcomes research are used as a lens for this examination.

Health-related quality of life in people receiving opioid agonist treatment and treatment for hepatitis C virus infection.

BACKGROUND: In people with chronic hepatitis C virus (HCV) infection, viral eradication is associated with improved health-related quality of life (HRQOL). OBJECTIVE: To assess changes in HRQOL among participants receiving opioid agonist therapy undergoing treatment for HCV infection. METHODS: COSTAR (NCT02251990) was a randomized, double-blind, placebo-controlled study. Adults with HCV infection on opioid agonist therapy received elbasvir (50 mg)/grazoprevir (100 mg) or placebo for 12 weeks. HRQOL was evaluated using the Medical Outcomes Study 36-Item Short Form Health Survey version 2 (SF-36v2) Acute Form. Participants remained blinded until 4 weeks after end of treatment. RESULTS: Overall, 201 participants received elbasvir/grazoprevir and 100 participants received placebo. Treatment difference mean change from baseline scores (elbasvir/grazoprevir minus placebo) indicated an improvement in HRQOL at 4 weeks after end of treatment in participants receiving elbasvir/grazoprevir versus those receiving placebo, driven by declining HRQOL in those receiving placebo and improved HRQOL in certain domains among participants receiving elbasvir/grazoprevir. Notable differences in SF-36v2 scores were evident in the general health (mean treatment difference [MTD], 6.00; 95% CI, 1.37-10.63), vitality (MTD, 6.81; 95% CI, 1.88-11.75), and mental health (MTD, 5.17; 95% CI, 0.52-9.82) domains and in the mental component summary score (mean, 2.83; 95% CI, 0.29-5.37). No notable between-treatment differences were evident at treatment weeks 4 or 12. CONCLUSION: HRQOL in patients receiving medication for opioid dependence was improved following treatment for HCV infection with elbasvir/grazoprevir, suggesting that eradication of HCV infection with direct-acting antivirals is associated with improved HRQOL. TRIAL REGISTRATION NUMBER: ClinicalTrials.gov, NCT02251990.

Managing multiple perspectives in the collaborative design process of a team health information technology.

We need to design technologies that support the work of health care teams; designing such solutions should integrate different clinical roles. However, we know little about the actual collaboration that occurs in the design process for a team-based care solution. This study examines how multiple perspectives were managed in the design of a team health IT solution aimed at supporting clinician information needs during pediatric trauma care transitions. We focused our analysis on four co-design sessions that involved multiple clinicians caring for pediatric trauma patients. We analyzed design session transcripts using content analysis and process coding guided by Détienne's (2006) co-design framework. We expanded upon Détienne (2006) three collaborative activities to identify specific themes and processes of collaboration between care team members engaged in the design process. The themes and processes describe how team members collaborated in a team health IT design process that resulted in a highly usable technology.