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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 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.

BACKGROUND AND OBJECTIVES Hospitalized children with medical complexity (CMC) are at high risk of medical errors. Their families are an underutilized source of hospital safety data. We evaluated safety concerns from families of hospitalized CMC and patient/parent characteristics associated with family safety concerns. METHODS We conducted a 12-month prospective cohort study of English- and Spanish-speaking parents/staff of hospitalized CMC on 5 units caring for complex care patients at a tertiary care children’s hospital. Parents completed safety and experience surveys predischarge. Staff completed surveys during meetings and shifts. Mixed-effects logistic regression with random intercepts controlling for clustering and other patient/parent factors evaluated associations between family safety concerns and patient/parent characteristics. RESULTS A total of 155 parents and 214 staff completed surveys (>89% response rates). 43% (n = 66) had ≥1 hospital safety concerns, totaling 115 concerns (1–6 concerns each). On physician review, 69% of concerns were medical errors and 22% nonsafety-related quality issues. Most parents (68%) reported concerns to staff, particularly bedside nurses. Only 32% of parents recalled being told how to report safety concerns. Higher education (adjusted odds ratio 2.94, 95% confidence interval [1.21–7.14], P = .02) and longer length of stay (3.08 [1.29–7.38], P = .01) were associated with family safety concerns. CONCLUSIONS Although parents of CMC were infrequently advised about how to report safety concerns, they frequently identified medical errors during hospitalization. Hospitals should provide clear mechanisms for families, particularly of CMC and those from disadvantaged backgrounds, to share safety concerns. Actively engaging patients/families in reporting will allow hospitals to develop a more comprehensive, patient-centered view of safety.

BACKGROUND AND OBJECTIVES Despite compelling evidence that patients and families report valid and unique safety information, particularly for children with medical complexity (CMC), hospitals typically do not proactively solicit patient or family concerns about patient safety. We sought to understand parent, staff, and hospital leader perspectives about family safety reporting in CMC to inform future interventions. METHODS This qualitative study was conducted at 2 tertiary care children’s hospitals with dedicated inpatient complex care services. A research team conducted approximately 60-minute semistructured, individual interviews with English and Spanish-speaking parents of CMC, physicians, nurses, and hospital leaders. Audio-recorded interviews were translated, transcribed, and verified. Two researchers coded data inductively and deductively developed and iteratively refined the codebook with validation by a third researcher. Thematic analysis allowed for identification of emerging themes. RESULTS We interviewed 80 participants (34 parents, 19 nurses and allied health professionals, 11 physicians, and 16 hospital leaders). Four themes related to family safety reporting were identified: (1) unclear, nontransparent, and variable existing processes, (2) a continuum of staff and leadership buy-in, (3) a family decision-making calculus about whether to report, and (4) misaligned staff and parent priorities and expectations. We also identified potential strategies for engaging families and staff in family reporting. CONCLUSIONS Although parents were deemed experts about their children, buy-in about the value of family safety reporting among staff and leaders varied, staff and parent priorities and expectations were misaligned, and family decision-making around reporting was complex. Strategies to address these areas can inform design of family safety reporting interventions attuned to all stakeholder groups.

OBJECTIVES To establish statewide consensus priorities for safer in-person school for children with medical complexity (CMC) during the coronavirus disease 2019 (COVID-19) pandemic using a rapid, replicable, and transparent priority-setting method. METHODS We adapted the Child Health and Nutrition Research Initiative Method, which allows for crowdsourcing ideas from diverse stakeholders and engages technical experts in prioritizing these ideas using predefined scoring criteria. Crowdsourcing surveys solicited ideas from CMC families, school staff, clinicians and administrators through statewide distribution groups/listservs using the prompt: “It is safe for children with complex health issues and those around them (families, teachers, classmates, etc.) to go to school in-person during the COVID-19 pandemic if/when…” Ideas were aggregated and synthesized into a unique list of candidate priorities. Thirty-four experts then scored each candidate priority against 5 criteria (equity, impact on COVID-19, practicality, sustainability, and cost) using a 5-point Likert scale. Scores were weighted and predefined thresholds applied to identify consensus priorities. RESULTS From May to June 2021, 460 stakeholders contributed 1166 ideas resulting in 87 candidate priorities. After applying weighted expert scores, 10 consensus CMC-specific priorities exceeded predetermined thresholds. These priorities centered on integrating COVID-19 safety and respiratory action planning into individualized education plans, educating school communities about CMC’s unique COVID-19 risks, using medical equipment safely, maintaining curricular flexibility, ensuring masking and vaccination, assigning seats during transportation, and availability of testing and medical staff at school. CONCLUSIONS Priorities for CMC, identified by statewide stakeholders, complement and extend existing recommendations. These priorities can guide implementation efforts to support safer in-person education for CMC.

OBJECTIVES: Children with medical complexity (CMC) are commonly assisted by medical devices, which family caregivers are responsible for managing and troubleshooting in the home. Optimizing device use by maximizing the benefits and minimizing the complications is a critical goal for CMC but is relatively unexplored. In this study, we sought to identify and describe workarounds families have developed to optimize medical device use for their needs. METHODS: We conducted 30 contextual inquiry interviews with families of CMC in homes. Interviews were recorded, transcribed, and analyzed for barriers and workarounds specific to medical device usage through a directed content analysis. We used observation notes and photographs to confirm and elaborate on interview findings. RESULTS: We identified 4 barriers to using medical devices in the home: (1) the quantity and type of devices allotted do not meet family needs, (2) the device is not designed to be used in locations families require, (3) device use is physically or organizationally disruptive to the home, and (4) the device is not designed to fit the user. We also identified 11 categories of workarounds to the barriers. CONCLUSIONS: Families face many barriers in using medical devices to care for CMC. Our findings offer rich narrative and photographic data revealing the ways in which caregivers work around these barriers. Future researchers should explore the downstream effects of these ubiquitous, necessary workarounds on CMC outcomes toward developing interventions that optimize device use for families.

BACKGROUND AND OBJECTIVES: Hospital discharge requires multidisciplinary coordination. Insufficient coordination impacts patient flow, resource use, and postdischarge outcomes. Our objectives were to (1) implement a prospective, multidisciplinary discharge timing designation in the electronic health record (EHR) and (2) evaluate its association with discharge timing. METHODS: This quality-improvement study evaluated the implementation of confirmed discharge time (CDT), an EHR designation representing specific discharge timing developed jointly by a patient’s family and the health care team. CDT was intended to support task management and coordination of multidisciplinary discharge processes and could be entered and viewed by all team members. Four plan-do-study-act improvement phases were studied: (1) baseline, (2) provider education, (3) provider feedback, and (4) EHR modification. Statistical process control charts tracked CDT use and the proportion of discharges before noon. Length of stay was used as a balancing measure. RESULTS: During the study period from April 2013 through March 2017, 20 133 pediatric discharges occurred, with similar demographics observed throughout all phases. Mean CDT use increased from 0% to 62%, with special cause variations being detected after the provider education and EHR modification phases. Over the course of the study, the proportion of discharges before noon increased by 6.2 percentage points, from 19.9% to 26.1%, whereas length of stay decreased from 47 (interquartile range: 25–95) to 43 (interquartile range: 24–88) hours (both P CONCLUSIONS: The implementation of a prospective, multidisciplinary EHR discharge time designation was associated with more before-noon discharges. Next steps include replicating results in other settings and determining populations that are most responsive to discharge coordination efforts.

BACKGROUND AND OBJECTIVES: Family-centered rounds (FCRs) have become standard of care, despite the limited evaluation of FCRs’ benefits or interventions to support high-quality FCR delivery. This work examines the impact of the FCR checklist intervention, a checklist and associated provider training, on performance of FCR elements, family engagement, and patient safety. METHODS: This cluster randomized trial involved 298 families. Two hospital services were randomized to use the checklist; 2 others delivered usual care. We evaluated the performance of 8 FCR checklist elements and family engagement from 673 pre- and postintervention FCR videos and assessed the safety climate with the Children’s Hospital Safety Climate Questionnaire. Random effects regression models were used to assess intervention impact. RESULTS: The intervention significantly increased the number of FCR checklist elements performed (β = 1.2, P < .001). Intervention rounds were significantly more likely to include asking the family (odds ratio [OR] = 2.43, P < .05) or health care team (OR = 4.28, P = .002) for questions and reading back orders (OR = 12.43, P < .001). Intervention families’ engagement and reports of safety climate were no different from usual care. However, performance of specific checklist elements was associated with changes in these outcomes. For example, order read-back was associated with significantly more family engagement. Asking families for questions was associated with significantly better ratings of staff’s communication openness and safety of handoffs and transitions. CONCLUSIONS: The performance of FCR checklist elements was enhanced by checklist implementation and associated with changes in family engagement and more positive perceptions of safety climate. Implementing the checklist improves delivery of FCRs, impacting quality and safety of care.