Co-creation and evaluation of online care maps for children with medical complexity.

Background: Care maps are a caregiver-created diagrammatic tool to support the care of children with medical complexity (CMC). They provide a high-level overview of care, allowing the care team to appreciate the interrelatedness of medical and non-medical aspects of care. Limitations currently exist for the usability, shareability, and integration of care maps into clinical care as they are typically paper-based and caregiver-held.

Improving Sleep by Minimizing Unnecessary Overnight Vital Signs in Hospitalized Patients.

Background: The sleep of hospitalized children is frequently interrupted by vital sign (VS) measurements. We aimed to increase the proportion of patient-nights with 1 or fewer overnight VS measurements.

Methods: This study included all patients admitted to general medicine services at a university-affiliated free-standing children's hospital.

Cloud Care: A Feasibility Study of Cloud-Based Care Plans for Children With Medical Complexity.

Background And Objectives: Cloud-based information systems can support team-based content management of care plans for children with medical complexity (CMC), yet we have limited knowledge of the feasibility of these systems. We aimed to examine the feasibility of Cloud Care, a novel cloud-based longitudinal care plan system, among a diverse group of caregivers and health care providers caring for CMC.

Methods: We conducted a 3-year, prospective, feasibility study between May 2019 and July 2022 in which caregivers and health care providers of CMC received access to Cloud Care for 4 to 32 months.

Impact of Strict Isolation Precautions on Families with a Language Other than English.

Introduction: Children with a language for care other than English (LOE) are at risk for inequitable care. We examined the association of isolation precautions in the care of hospitalized children with LOE through the frequency of professional interpreter use and timing of in-person consultation.

Methods: Retrospective cohort study of children in a strict isolation unit (SIU) between 2/2020 and 12/2021.

Development of an Inclusive Demographic Survey for Clinical Care and Research.

Background And Objectives: There is a need to accurately capture family demographic information to ensure appropriate delivery of services, optimize patient experiences, and examine health disparities; however, we lack a standardized and inclusive approach to collect demographic data. Our objective was to design a set of inclusive survey items for common demographic categories that can be used for clinical care and research.

Methods: In this prospective, mixed-methods study, we used a rigorous survey design approach to conduct a literature review, seek expert validation, and perform cognitive pretesting with families between October 2021 and September 2023 to iteratively develop an inclusive demographic survey.

Financial toxicity among pediatric oncology families during therapy and early survivorship: a qualitative analysis.

Purpose: Cancer treatment often results in adverse financial consequences-also termed financial toxicity. To build upon limited research in pediatric oncology, we conducted a qualitative study exploring families' lived experiences with financial toxicity and their perspectives on potential mitigation strategies.

Methods: We conducted in-depth semi-structured interviews with a purposive sample of English- and Spanish-speaking family caregivers, 3-24 months following diagnosis.

Caregiver and Care Team Perceptions of Online Collaborative Care Planning for CMC.

Background And Objectives: Care plans summarize a child with medical complexity's (CMC) medical history and ongoing care needs. Often, the health care team controls the care plan content, limiting caregivers' ability to edit the document in real time and potentially compromising accuracy and utility. With this study, we aimed to provide caregivers of CMC with online access and shared editing control of their child's care plan and to explore the experiences of caregivers and care team members (CTMs) after using an online collaborative care plan (OCCP).

A multicenter randomized trial to compare automatic versus as-needed follow-up for children hospitalized with common infections: The FAAN-C trial protocol.

Introduction: Physicians commonly recommend automatic primary care follow-up visits to children being discharged from the hospital. While automatic follow-up provides an opportunity to address postdischarge needs, the alternative is as-needed follow-up. With this strategy, families monitor their child's symptoms and decide if they need a follow-up visit in the days after discharge.

Identifying adaptations for a mindfulness program for Spanish-speaking mothers of children with chronic conditions or disabilities.

Mothers of children with chronic conditions or disabilities have benefited from mindfulness programs, yet culturally relevant mindfulness programs for Spanish-speaking mothers are lacking. We aimed to explore how this population experienced a peer-led mindfulness program to inform adaptations. Sixteen mothers attended a 6-week program and completed semi-structured interviews.

Spanish Translation of a Parent-Reported Hospital-to-Home Transition Experience Measure.

Objectives: A critical focus of pediatric hospital systems is to improve the quality of hospital-to-home transitions. Although validated patient-reported measures evaluating these improvement efforts exist for English-speaking families, a comprehensive measure to assess transition quality among families who speak a language other than English does not yet exist.

Methods: We used a team consensus translation approach to translate and culturally adapt the previously validated Pediatric Transition Experience Measure (P-TEM), a caregiver-reported hospital-to-home transition quality measure, from English to Spanish.

Improving the Quality of Written Discharge Instructions: A Multisite Collaborative Project.

Background And Objectives: Written discharge instructions help to bridge hospital-to-home transitions for patients and families, though substantial variation in discharge instruction quality exists. We aimed to assess the association between participation in an Institute for Healthcare Improvement Virtual Breakthrough Series collaborative and the quality of pediatric written discharge instructions across 8 US hospitals.

Methods: We conducted a multicenter, interrupted time-series analysis of a medical records-based quality measure focused on written discharge instruction content (0-100 scale, higher scores reflect better quality).

Population-Based Impact of Rurality and Neighborhood-Level Socioeconomic Disadvantage on Pediatric Cancer Mortality in Washington State.

Background: Childhood cancer-related mortality differs by socioeconomic factors, but the impact of residential location, including rurality and neighborhood-level socioeconomic disadvantage, is not well-characterized.

Methods: This retrospective cohort study linked Washington State cancer registry data (1992-2013) to state birth (1974-2013) and death records (1992-2013) to identify residents <20 years diagnosed with cancer (n = 4,306). Census-based rural-urban commuting area codes and Area Deprivation Index (ADI) defined rural residence and neighborhood socioeconomic disadvantage at time of cancer diagnosis, respectively.

Strategies to Improve the Quality of Team-Based Care for Neonatal Abstinence Syndrome.

Background: Prioritizing nonpharmacologic care for neonatal abstinence syndrome (NAS) requires a team-based care (TBC) approach to facilitate staff and family engagement. We aimed to identify the important structures and processes of care for TBC of infants with NAS and quality of care outcomes that are meaningful to care team members (including parents).

Methods: Using a Donabedian framework, we conducted semistructured interviews from May to October 2019 with care team members at 3 community hospitals, including parents, nurses, social workers, physicians, lactation nurses, child protective services, volunteers, and hospital administrators.

Drivers of Variation in Diagnosis and Management of Eosinophilic Esophagitis: A Survey of Pediatric Gastroenterologists.

Background: Widespread variation in the diagnosis and treatment of eosinophilic esophagitis (EoE) has previously been reported among adult gastroenterologists; however, variation in EoE practice in among pediatric populations is poorly characterized. The study objectives were to describe guideline adherence and understand reasons for variation in EoE practice among pediatric gastroenterologists following publication of the updated 2018 international EoE guidelines.

Methods: We developed and administered a 28-item survey to pediatric gastroenterologists via an email listserv using the PEDGI Bulletin Board from 03/2019 to 04/2019.

Caregiver and provider experiences of physical, occupational, and speech therapy for children with medical complexity.

Purpose: Children with medical complexity (CMC) often use rehabilitative services ("therapy") to achieve optimal health outcomes. The study aims were to characterize caregiver and provider experiences with: 1) determining the suitability of therapy and 2) obtaining therapy for CMC.

Methods: Primary caregivers of CMC (n = 20) and providers (n = 14) were interviewed using semi-structured questions to elicit experiences of therapy.

Perspectives of Parents and Providers on Reasons for Mental Health Readmissions: A Content Analysis Study.

Pediatric hospitalizations for mental health conditions are rapidly increasing, with readmission rates for mental health conditions surpassing those for non-mental health conditions. The objective of this study was to identify reasons for pediatric mental health readmissions from the perspectives of parents and providers. We performed a retrospective content analysis of surveys administered to parents and providers of patients with a 14-day readmission to an inpatient pediatric psychiatry unit between 5/2017 and 8/2018.

An implementation model for managing cloud-based longitudinal care plans for children with medical complexity.

Objective: We aimed to iteratively refine an implementation model for managing cloud-based longitudinal care plans (LCPs) for children with medical complexity (CMC).

Materials And Methods: We conducted iterative 1-on-1 design sessions with CMC caregivers (ie, parents/legal guardians) and providers between August 2017 and March 2019. During audio-recorded sessions, we asked participants to walk through role-specific scenarios of how they would create, review, and edit an LCP using a cloud-based prototype, which we concurrently developed.

User-centered design of a longitudinal care plan for children with medical complexity.

Objective: To determine the content priorities and design preferences for a longitudinal care plan (LCP) among caregivers and healthcare providers who care for children with medical complexity (CMC) in acute care settings.

Materials And Methods: We conducted iterative one-on-one design sessions with CMC caregivers (ie, parents/legal guardians) and providers from 5 groups: complex care, primary care, subspecialists, emergency care, and care coordinators. Audio-recorded sessions included content categorization activities, drawing exercises, and scenario-based testing of an electronic LCP prototype.

Caregiver and Provider Experiences of Home Healthcare Quality for Children With Medical Complexity.

Despite a growing population of children with medical complexity, little is known about the current quality of pediatric home healthcare. The objective of this study was to characterize the quality of pediatric home healthcare experienced by primary family caregivers (parents) and healthcare providers of children with medical complexity. Semistructured, in-depth key informant interviews of 20 caregivers and 20 providers were conducted and analyzed for factors affecting home healthcare quality using the Institute of Medicine's quality framework (effective, safe, patient-centered, timely, equitable, and efficient).

Social Disadvantage, Access to Care, and Disparities in Physical Functioning Among Children Hospitalized with Respiratory Illness.

Background And Objectives: Understanding disparities in child health-related quality of life (HRQoL) may reveal opportunities for targeted improvement. This study examined associations between social disadvantage, access to care, and child physical functioning before and after hospitalization for acute respiratory illness.

Methods: From July 1, 2014, to June 30, 2016, children ages 8-16 years and/or caregivers of children 2 weeks to 16 years admitted to five tertiary care children's hospitals for three common respiratory illnesses completed a survey on admission and within 2 to 8 weeks after discharge.

Validation of a Parent-Reported Hospital-to-Home Transition Experience Measure.

Objectives: The Pediatric Transition Experience Measure (P-TEM) is an 8-item, parent-reported measure that globally assesses hospital-to-home transition quality from discharge through follow-up. Our goal was to examine the convergent validity of the P-TEM with existing, validated process and outcome measures of pediatric hospital-to-home transitions.

Methods: This was a prospective, cohort study of English-speaking parents and legal guardians who completed the P-TEM after their children's discharge from a tertiary children's hospital between January 2016 and October 2016.

A Qualitative Evaluation of a Clinical Faculty Mentorship Program Using a Realist Evaluation Approach.

Objective: Clinically focused faculty (full-time clinical faculty and clinician educators) comprise an increasing proportion of academic faculty, yet they underutilize mentorship nationally. The aims of this study were to test and refine a program theory for an institutional mentorship program for junior clinically focused faculty and to understand the facilitators and barriers of sustained participation.

Methods: We conducted a qualitative study using a realist evaluation approach.

Parent Attitudes and Preferences for Discussing Health Care Costs in the Inpatient Setting.

Objectives: To explore parent attitudes toward discussing their child's health care costs in the inpatient setting and to identify strategies for health care providers to engage in cost discussions with parents.

Methods: Using purposeful sampling, we conducted semistructured interviews between October 2017 and February 2018 with parents of children with and without chronic disease who received care at a tertiary academic children's hospital. Researchers coded the data using applied thematic analysis to identify salient themes and organized them into a conceptual model.