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BACKGROUND: Disparities in school attendance exist for children with medical complexity (CMC) due to COVID-19. Longitudinal changes in family-reported school safety perceptions and predictors of full-time, in-person school attendance are unknown. METHODS: This was a prospective, longitudinal cohort study with 3 survey waves (June 2021-June 2022) among English- and Spanish-speaking families of CMC aged 5 to 17 years and pre-pandemic school attendance. Changes in Health Belief Model perceptions and full-time in-person school attendance were estimated using multivariate generalized linear modeling with repeated measures. RESULTS: Among 1601 respondents (52.9% of 3073 invited), 86.8% participated in all 3 surveys. School safety perceptions improved with time; however, perceived susceptibility to COVID-19 increased. Full-time in-person school attendance rose from 48.4% to 90.0% from wave 1 to 3 (p < .0001), and was associated with motivation, benefits, and cues. For example, families with low compared to high motivation for in-person attendance had 76% versus 98% predicted probability for child's school attendance, respectively at wave 3 (p < .0001). IMPLICATIONS FOR SCHOOL HEALTH POLICY, PRACTICE, AND EQUITY: Probability of full-time in-person school attendance was associated with several health belief model perceptions. School health policy and programs may benefit from promoting family motivation, benefits, and cues during future respiratory illness epidemics including COVID-19. CONCLUSIONS: In-person school attendance improved for CMC over time. Opportunities exist to continue optimizing in-person attendance and family-perceived safety for CMC at school.
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BACKGROUND AND OBJECTIVES: High-flow nasal cannula (HFNC) is used in up to 50% of children admitted with bronchiolitis. Consensus recommendations for feeding these children have not been established, and there is variability in practice. We sought to identify factors influencing feeding decisions for general care patients admitted with bronchiolitis on HFNC from a national sample of interdisciplinary care team members. METHODS: In this qualitative study, we conducted semi-structured virtual interviews with care team members involved in making feeding decisions at 10 US hospitals from June 2022 to March 2023. Eligible participants included 1 nurse, respiratory therapist, speech language pathologist, and physician from each site. Interviews were audio-recorded, transcribed, and conducted until reaching sufficiency. Three researchers analyzed transcript data using content analysis guided by the Systems Engineering Initiative for Patient Safety 2.0 model. RESULTS: We interviewed 29 participants, including 19 nurses, respiratory therapists, and speech language pathologists and 10 physicians. Participants identified 11 factors influencing feeding decisions related to hospital work systems and processes outlined in the Systems Engineering Initiative for Patient Safety model, including people (child and parent characteristics, care team experience), tools and technology (guideline, protocol, ordersets), organization (institutional culture, education), environment (time of day, care location), task (interventions to optimize feeding), and process (clinical assessment, feeding trial, communication). CONCLUSIONS: Our findings suggest that feeding decisions are driven by factors related to the child, care team experience, institutional tools, and culture. These key factors may inform local improvement efforts to decrease variation in feeding children with bronchiolitis requiring HFNC.
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Bronquiolitis , Femenino , Humanos , Lactante , Masculino , Bronquiolitis/terapia , Cánula , Toma de Decisiones , Terapia por Inhalación de Oxígeno/instrumentación , Terapia por Inhalación de Oxígeno/métodos , Grupo de Atención al Paciente , Investigación Cualitativa , Estados UnidosRESUMEN
BACKGROUND: Preterm birth affects 10% of all births annually in the United States. Outcomes of people born preterm are challenging to predict because of multiple influences, including gestational age, birth weight, and social and environmental contexts, that contribute to an individual's growth and developmental trajectory. The influence of toxic stress is underrepresented in the literature assessing preterm birth outcomes. OBJECTIVES: The current analyses use the eco-bio-developmental model of poverty and preterm birth as a framework to model the pathways among toxic stress, preterm birth, and neurodevelopmental outcomes. Poverty and toxic stress were hypothesized to increase the risk for impaired neurodevelopmental and academic outcomes-both directly and indirectly. METHODS: The analytic sample of 55,873 children aged 6-17 years was derived from the National Survey of Children's Health 2020-2021. Structural equation models with combined measurement and path models for each dependent variable were constructed using latent toxic stress variables. The structural path equations included direct paths from the latent measure of prenatal toxic stress, preterm birth status, and the latent measure of childhood toxic stress to the neurodevelopmental outcome, as well as an indirect, mediated path from prenatal toxic stress through preterm birth status to the outcome. RESULTS: Across models, higher levels of prenatal toxic stress were significantly associated with preterm birth and lower birth weight ranges. Preterm low birth weight status was associated with a greater likelihood of neurodevelopmental impairment, repeating a grade, and special education plans. The predicted probabilities of neurodevelopmental impairment, repeating grades, and special education plans are significantly higher with above-average levels of exposure to prenatal and childhood toxic stress. DISCUSSION: There is a need for prospective studies that assess predictors and outcomes of preterm birth that are stratified by gestational age and consider the timing, chronicity, and influence of toxic stress and environmental exposures. There is an imperative for public health programs and policies designed to support families, caregivers, and children to address the individual and structural social determinants of health that contribute to toxic stress, thereby increasing preterm birth rates and negatively affecting the outcomes of children born preterm.
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Rendimiento Académico , Nacimiento Prematuro , Humanos , Femenino , Niño , Nacimiento Prematuro/epidemiología , Masculino , Adolescente , Estados Unidos/epidemiología , Rendimiento Académico/estadística & datos numéricos , Recién Nacido , Embarazo , Desarrollo Infantil/fisiologíaRESUMEN
OBJECTIVES: Children with medical complexity experienced health disparities during the coronavirus disease 2019 (COVID-19) pandemic. Language may compound these disparities since people speaking languages other than English (LOE) also experienced worse COVID-19 outcomes. Our objective was to investigate associations between household language for children with medical complexity and caregiver COVID-19 vaccine intentions, testing knowledge, and trusted sources of information. METHODS: This cross-sectional survey of caregivers of children with medical complexity ages 5 to 17 years was conducted from April-June 2022. Children with medical complexity had at least 1 Complex Chronic Condition. Households were considered LOE if they reported speaking any language other than English. Multivariable logistic regression examined associations between LOE and COVID-19 vaccine intentions, interpretation of COVID-19 test results, and trusted sources of information. RESULTS: We included 1,338 caregivers of children with medical complexity (49% response rate), of which 133 (10%) had household LOE (31 total languages, 58% being Spanish). There was no association between household LOE and caregiver COVID-19 vaccine intentions. Caregivers in households with LOE had similar interpretations of positive COVID-19 test results, but significantly different interpretations of negative results. Odds of interpreting a negative test as expected (meaning the child does not have COVID-19 now or can still get the virus from others) were lower in LOE households (aOR [95% CI]: 0.56 [0.34-0.95]). Households with LOE were more likely to report trusting the US government to provide COVID-19 information (aOR [95% CI]: 1.86 [1.24-2.81]). CONCLUSION: Differences in COVID-19 test interpretations based on household language for children with medical complexity were observed and could contribute to disparities in outcomes. Opportunities for more inclusive public health messaging likely exist.
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Vacunas contra la COVID-19 , COVID-19 , Lenguaje , Humanos , Niño , COVID-19/prevención & control , COVID-19/epidemiología , Masculino , Femenino , Adolescente , Vacunas contra la COVID-19/administración & dosificación , Preescolar , Estudios Transversales , SARS-CoV-2 , Intención , Cuidadores/psicología , Adulto , Disparidades en Atención de Salud , Composición Familiar , Encuestas y Cuestionarios , Vacunación/psicología , Vacunación/estadística & datos numéricosRESUMEN
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.
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Análisis de Datos , Humanos , Proyectos de Investigación , Pediatría/métodos , Análisis de Datos SecundariosRESUMEN
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.
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COVID-19 , Personal de Salud , Padres , Estrés Psicológico , Humanos , COVID-19/epidemiología , COVID-19/psicología , Femenino , Masculino , Padres/psicología , Niño , Adulto , Adolescente , Estrés Psicológico/psicología , Estrés Psicológico/epidemiología , Personal de Salud/psicología , SARS-CoV-2 , Pandemias , Persona de Mediana EdadRESUMEN
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.
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Cuidadores , Informática Médica , Niño , Humanos , Cuidadores/psicología , Investigación Cualitativa , Mid-Atlantic Region , EmocionesRESUMEN
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.
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Alfabetización en Salud , Médicos , Humanos , Niño , Padres , Comunicación , PercepciónRESUMEN
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.
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Registros Electrónicos de Salud , Padres , Adulto , Niño , Humanos , Adolescente , Comunicación , Confidencialidad , Grupos FocalesRESUMEN
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.
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Médicos , Humanos , Lugar de Trabajo , Encuestas y Cuestionarios , Consenso , Calidad de la Atención de SaludRESUMEN
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.
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Medicina Hospitalar , Médicos Hospitalarios , Humanos , Niño , Atención a la Salud , Ergonomía , Hospitales PediátricosRESUMEN
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.
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Comunicación , Informática Médica , Humanos , Niño , Seguridad del Paciente , Análisis y Desempeño de Tareas , TecnologíaRESUMEN
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.
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Niño Hospitalizado , Hospitalización , Niño , Humanos , Alta del Paciente , Comunicación , Hospitales PediátricosRESUMEN
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.
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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.
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COVID-19 , Humanos , Niño , Instituciones Académicas , Padres , Encuestas y Cuestionarios , Medio Oeste de Estados UnidosRESUMEN
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.
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Hospitalización , Pacientes Internos , Humanos , Niño , Padres , Hospitales Pediátricos , Actitud Frente a la SaludRESUMEN
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.
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Atención de Enfermería , Estudiantes de Enfermería , Humanos , Niño , Reproducibilidad de los Resultados , Discapacidades del Desarrollo , Actitud Frente a la Salud , Docentes de Enfermería , Psicometría , Encuestas y CuestionariosRESUMEN
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.