47 research outputs found

    Communication transforms the impact of the COVID-19 pandemic on children with cancer and their families

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    Pediatric cancer; Psychosocial studies; Quality of lifeCàncer pediàtric; Estudis psicosocials; Qualitat de vidaCáncer pediátrico; Estudios psicosociales; Calidad de vidaBackground The COVID-19 pandemic altered healthcare systems globally, causing delays in care delivery and increased anxiety among patients and families. This study examined how hospital stakeholders and clinicians perceived the global impact of the COVID-19 pandemic on children with cancer and their families. Methods This secondary analysis examined data from a qualitative study consisting of 19 focus groups conducted in 8 languages throughout 16 countries. A codebook was developed with novel codes derived inductively from transcript review. In-depth analysis focused on the impact of the COVID-19 pandemic on children with cancer and their families. Results Eight themes describing the impact of the pandemic on patients and their families were identified and classified into three domains: contributing factors (COVID-19 Policies, Cancer Treatment Modifications, COVID-19 Symptoms, Beliefs), patient-related impacts (Quality of Care, Psychosocial impacts, Treatment Reluctance), and the central transformer (Communication). Participants described the ability of communication to transform the effect of contributing factors on patient-related impacts. The valence of impacts depended on the quality and quantity of communication among clinicians and between clinicians and patients and families. Conclusions Communication served as the central factor impacting whether the COVID-19 pandemic positively or negatively affected children with cancer and families. These findings emphasize the key role communication plays in delivering patient-centered care and can guide future development of communication-centered interventions globally.Funding support to St. Jude Children's Research Hospital provided by the Cancer Center Support (CORE) grant (CA21765) and the American Lebanese-Syrian Associated Charities (ALSAC)

    Utilizing Multilingual Methods and Rapid Analysis for Global Qualitative Research During a Pandemic

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    Pediatric cancer; Rapid qualitative analysisCáncer pediátrico; Análisis cualitativo rápidoCàncer pediàtric; Anàlisi qualitativa ràpidaHistorically, qualitative research has complemented quantitative biologic and epidemiologic studies to provide a more complete understanding of pandemics. The COVID-19 pandemic has generated unique and novel challenges for qualitative researchers, who have embraced creative solutions including virtual focus groups and rapid analyses to continue their work. We present our experience conducting a multilingual global qualitative study of healthcare resilience among teams of pediatric oncology professionals during the COVID-19 pandemic. We provide an in-depth description of our methodology and an analysis of factors we believe contributed to our study's success including our use of technology, engagement of a large multilingual team, global partnerships, and framework-based rapid analysis. We hope these techniques may be useful to qualitative researchers conducting studies during the current pandemic, as well as for all pediatric oncology studies including multiple languages or geographically disparate subjects

    The Global COVID-19 Observatory and Resource Center for Childhood Cancer: A response for the pediatric oncology community by SIOP and St. Jude Global

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    The COVID-19 pandemic quickly led to an abundance of publications and recommendations, despite a paucity of information on how COVID-19 affects children with cancer. This created a dire need for a trusted resource with curated information and a space for the pediatric oncology community to share experiences. The Global COVID-19 Observatory and Resource Center for Childhood Cancer was developed, launched, and maintained by the International Society of Pediatric Oncology and St. Jude Children's Research Hospital. The three components (Resource Library, Global Registry, and Collaboration Space) complement each other, establishing a mechanism to generate and transfer knowledge rapidly throughout the community.Fil: Moreira, Daniel C.. St. Jude Children's Research Hospital; Estados UnidosFil: Sniderman, Elizabeth. St. Jude Children's Research Hospital; Estados UnidosFil: Mukkada, Sheena. St. Jude Children's Research Hospital; Estados UnidosFil: Chantada, Guillermo Luis. Universidad Austral. Facultad de Ciencias Biomédicas. Instituto de Investigaciones en Medicina Traslacional. Consejo Nacional de Investigaciones Científicas y Técnicas. Oficina de Coordinación Administrativa Parque Centenario. Instituto de Investigaciones en Medicina Traslacional; ArgentinaFil: Bhakta, Nickhill. St. Jude Children's Research Hospital; Estados UnidosFil: Foster, Whitney. St. Jude Children's Research Hospital; Estados UnidosFil: Avula, Meghana. St. Jude Children's Research Hospital; Estados UnidosFil: Homsi, Maysam R.. St. Jude Children's Research Hospital; Estados UnidosFil: Faughnan, Lane. St. Jude Children's Research Hospital; Estados UnidosFil: Happ, Brooke. St. Jude Children's Research Hospital; Estados UnidosFil: Andujar, Allyson. St. Jude Children's Research Hospital; Estados UnidosFil: Sonnenfelt, Jason. St. Jude Children's Research Hospital; Estados UnidosFil: Dalvi, Rashmi. Bombay Hospital And Medical Research Centre; IndiaFil: Frazier, A. Lindsay. No especifíca;Fil: Hessissen, Laila. Universite Mohammed V. Rabat; Otros paises de ÁfricaFil: Kearns, Pamela R.. No especifíca;Fil: Luna Fineman, Sandra. No especifíca;Fil: Moreno, Arturo. Hospital Universitario de Puebla; MéxicoFil: Saghir Khan, Muhammad. No especifíca;Fil: Sullivan, Michael. Royal Children's Hospital, Melbourne; AustraliaFil: Devidas, Meenakshi. St. Jude Children's Research Hospital; Estados UnidosFil: Santana, Victor. St. Jude Children's Research Hospital; Estados UnidosFil: Caniza, Miguela. St. Jude Children's Research Hospital; Estados UnidosFil: Pritchard Jones, Kathy. University College London; Estados UnidosFil: Rodriguez Galindo, Carlos. St. Jude Children's Research Hospital; Estados Unido

    Of risks and regulations: how leading U.S. nanoscientists form policy stances about nanotechnology

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    Even though there is a high degree of scientific uncertainty about the risks of nanotechnology, many scholars have argued that policy-making cannot be placed on hold until risk assessments are complete (Faunce, Med J Aust 186(4):189–191, 2007; Kuzma, J Nanopart Res 9(1):165–182, 2007; O’Brien and Cummins, Hum Ecol Risk Assess 14(3):568–592, 2008; Powell et al., Environ Manag 42(3):426–443, 2008). In the absence of risk assessment data, decision makers often rely on scientists’ input about risks and regulation to make policy decisions. The research we present here goes beyond the earlier descriptive studies about nanotechnology regulation to explore the heuristics that the leading U.S. nanoscientists use when they make policy decisions about regulating nanotechnology. In particular, we explore the relationship between nanoscientists’ risk and benefit perceptions and their support for nanotech regulation. We conclude that nanoscientists are more supportive of regulating nanotechnology when they perceive higher levels of risks; yet, their perceived benefits about nanotechnology do not significantly impact their support for nanotech regulation. We also find some gender and disciplinary differences among the nanoscientists. Males are less supportive of nanotech regulation than their female peers and materials scientists are more supportive of nanotechnology regulation than scientists in other fields. Lastly, our findings illustrate that the leading U.S. nanoscientists see the areas of surveillance/privacy, human enhancement, medicine, and environment as the nanotech application areas that are most in need of new regulations

    A new measure for multi-professional medical team communication: design and methodology for multilingual measurement development

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    BackgroundAs implementation science in global health continues to evolve, there is a need for valid and reliable measures that consider diverse linguistic and cultural contexts. A standardized, reproducible process for multilingual measure development may improve accessibility and validity by participants in global health settings. To address this need, we propose a rigorous methodology for multilingual measurement development. We use the example of a novel measure of multi-professional team communication quality, a determinant of implementation efforts.MethodsThe development and translation of this novel bilingual measure is comprised of seven steps. In this paper, we describe a measure developed in English and Spanish, however, this approach is not language specific. Participants are engaged throughout the process: first, an interprofessional panel of experts and second, through cognitive interviewing for measure refinement. The steps of measure development included: (1) literature review to identify previous measures of team communication; (2) development of an initial measure by the expert panel; (3) cognitive interviewing in a phased approach with the first language (English); (4): formal, forward-backward translation process with attention to colloquialisms and regional differences in languages; (5) cognitive interviewing repeated in the second language (Spanish); (6) language synthesis to refine both instruments and unify feedback; and (7) final review of the refined measure by the expert panel.ResultsA draft measure to assess quality of multi-professional team communication was developed in Spanish and English, consisting of 52 questions in 7 domains. This measure is now ready for psychometric testing.ConclusionsThis seven-step, rigorous process of multilingual measure development can be used in a variety of linguistic and resource settings. This method ensures development of valid and reliable tools to collect data from a wide range of participants, including those who have historically been excluded due to language barriers. Use of this method will increase both rigor and accessibility of measurement in implementation science and advance equity in research and practice

    Elevated southern hemisphere moisture availability during glacial periods

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    This data is a supplement to Weij et al. 2024, Nature, and includes all datasets generated in this study. Additionally, Wavemetrics IgorPro code is made available for calculating and plotting probabilistic KDEs. Please cite this study when using this code.</p

    Impact of the COVID-19 pandemic on pediatric oncology providers globally: A mixed-methods study

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    Background: Coronavirus disease 2019 (COVID-19) disrupted pediatric oncology care globally, increasing demands on health care providers (HCPs) who adapted to continue care. This study sought to characterize the pandemic's impact on pediatric oncology HCPs worldwide. Methods: A 60-item survey focused on changes to clinical care, resources, and effects on clinicians. A diverse subgroup of institutions was purposefully selected for focus groups that explored teamwork, communication, and changes to care delivery. Results: The survey included 311 responses from 213 institutions representing 79 countries. Sixteen institutions participated in 19 multidisciplinary focus groups in 8 languages. Decreased clinical staff availability was cited by 51% of institutions as a major impact. Staffing modifications included decreased provider availability (66% of institutions), roles or responsibility changes, and transfer outside the specialty. Physical effects included frequent COVID-19 illness; 8% of respondents reported HCP deaths. Fifty percent of providers did not have the necessary personal protective equipment. HCPs also experienced psychological distress and financial concerns. Findings indicated more frequent impact on nurses than other providers. Impacts were described across all hospital resource levels, with staffing modifications more frequent in countries with higher COVID-19 incidence (P <.001) and mortality rate (P =.004). Focus groups revealed negative impacts were stabilized by increased teamwork, communication, contributions outside usual roles, policies aimed at optimizing safety, and feeling that they were contributing. Conclusions: COVID-19 had a profound impact on the pediatric oncology workforce, creating challenging modifications to staffing and resulting in physical, psychological, and financial distress. Despite these challenges, HCPs caring for children with cancer came together to continue to provide high-quality care
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