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Psychiatric and mental health (PMH) nurses integrate the concept of trauma-informed care into practice, policy, and education. Despite the frequency of PMH nurses practicing in a trauma-informed manner, there is a paucity of literature focused on integrating trauma-informed principles into research methods. Professions outside of the nursing sphere, specifically social work and social sciences, predominate the discourse around trauma-informed research. The authors of this manuscript provide detailed methods on a project using trauma-informed qualitative research methods with a feminist perspective. Semi-structured interviews with ten individuals with an experience of sexual violence answered the research question: what is the retrospective experience of women who encountered sexual violence in post-secondary education? An important part of the research design was an informal debrief with the audio recorder off, after the interview. Field notes were taken within this debrief, and participants reviewed these field notes as part of the member-checking process. By explaining the methods used in detail, referencing the available literature, and using the critical reflection of participants captured in the field notes, the authors of this manuscript explore strengths, conflicts, and boundary issues PMH nurses need to consider when integrating trauma-informed research methods into their research practices.
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Background: The inflammatory changes that underlie the heterogeneous presentations of COVID-19 remain incompletely understood. In this study we aimed to identify inflammatory profiles that precede the development of severe COVID-19, that could serve as targets for optimised delivery of immunomodulatory therapies and provide insights for the development of new therapies. Methods: We included individuals sampled <10 days from COVID-19 symptom onset, recruited from both inpatient and outpatient settings. We measured 61 biomarkers in plasma, including markers of innate immune and T cell activation, coagulation, tissue repair and lung injury. We used principal component analysis and hierarchical clustering to derive biomarker clusters, and ordinal logistic regression to explore associations between cluster membership and maximal disease severity, adjusting for known risk factors for severe COVID-19. Results: In 312 individuals, median (IQR) 7 (4-9) days from symptom onset, we found four clusters. Cluster 1 was characterised by low overall inflammation, cluster 2 was characterised by higher levels of growth factors and markers of endothelial activation (EGF, VEGF, PDGF, TGFα, PAI-1 and p-selectin). Cluster 3 and 4 both had higher overall inflammation. Cluster 4 had the highest levels of most markers including markers of innate immune activation (IL6, procalcitonin, CRP, TNFα), and coagulation (D-dimer, TPO), in contrast cluster 3 had the highest levels of alveolar epithelial injury markers (RAGE, ST2), but relative downregulation of growth factors and endothelial activation markers, suggesting a dysfunctional inflammatory pattern. In unadjusted and adjusted analysis, compared to cluster 1, cluster 3 had the highest odds of progressing to more severe disease (unadjusted OR (95%CI) 9.02 (4.53-17.96), adjusted OR (95%CI) 6.02 (2.70-13.39)). Conclusion: Early inflammatory profiles predicted subsequent maximal disease severity independent of risk factors for severe COVID-19. A cluster with downregulation of growth factors and endothelial activation markers, and early evidence of alveolar epithelial injury, had the highest risk of severe COVID-19.
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Long-term residential care (LTRC) should be a safe place to work and to live, but it can be a site of violent situations for older people and staff. In this article, we draw on critical geographies, aging, and violence research to analyze how staff perceive, manage, and control the risk of violence in LTRC. Specifically, we explore the role of space as an instrument of control in places of care; the language of risk and risk containment in these places; and how movement figures into management of the risk of violence. Data included telephone and web-based semi-structured interviews with 29 staff in two Canadian provinces from 2021 to 2023, which were analyzed inductively. LTRC staff described having access to and support from other staff as an important feature of safe places. They also emphasized visibility, opportunities to escape from violent or threatening situations, being cognizant of objects that may be used as weapons and moving some residents to other tables, rooms, or specialized units. Finally, some staff acknowledged tensions between person-centered care and protecting staff and resident safety. Our analysis raises concerns about whether the management of space, objects, and activities employed to promote safety contribute to the care and dignity of older people. By drawing attention to the role of space, place, and risk containment in managing violent situations, we illustrate the important contributions of critical geography in troubling institutional care for older people.
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Cryptosporidium poses significant public health risks as a cause of waterborne disease worldwide. Clinical surveillance of cryptosporidiosis is largely underreported due to the asymptomatic and mildly symptomatic infections, clinical misdiagnoses, and barriers to access testing. Wastewater surveillance overcomes these limitations and could serve as an effective tool for identifying cryptosporidiosis at the population level. Despite its potential, the lack of standardized wastewater surveillance methods for Cryptosporidium spp. challenges implementation design and the comparability between studies. Thus, this study compared and contrasted Cryptosporidium wastewater surveillance methods for concentrating wastewater oocysts, extracting oocyst DNA, and detecting Cryptosporidium genetic markers. The evaluated concentration methods included electronegative membrane filtration, Envirocheck HV capsule filtration, centrifugation, and Nanotrap Microbiome Particles, with and without additional immunomagnetic separation purification (except for the Nanotrap Microbiome Particles). Oocyst DNA extraction by either the DNeasy Powersoil Pro kit and the QIAamp DNA Mini kit were evaluated and the impact of bead beating and freeze-thaw pretreatments on DNA recoveries was assessed. Genetic detection via qPCR assays targeting either the Cryptosporidium 18S rRNA gene or the Cryptosporidium oocyst wall protein gene were tested. Oocyst recovery percentages were highest for centrifugation (39-77 %), followed by the Nanotrap Microbiome Particles (24 %), electronegative filtration with a PBST elution (22 %), and Envirocheck HV capsule filtration (13 %). Immunomagnetic separation purification was found to be unsuitable due to interference from the wastewater matrix. Bead-beating pretreatment enhanced DNA recoveries from both the DNeasy Powersoil Pro kit (314 gc/µL DNA) and the QIAamp DNA Mini kit (238 gc/µL DNA). In contrast, freeze-thaw pretreatment reduced DNA recoveries to under 92 gc/µL DNA, likely through DNA degradation. Finally, while both qPCR assays were specific to Cryptosporidium spp., the 18S rRNA assay had a 5-fold lower detection limit and could detect a wider range of Cryptosporidium spp. than the Cryptosporidium oocyst wall protein assay.
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Cryptosporidium , Aguas Residuales , Cryptosporidium/aislamiento & purificación , Cryptosporidium/genética , Aguas Residuales/parasitología , Oocistos/aislamiento & purificación , Monitoreo del Ambiente/métodos , Criptosporidiosis , ARN Ribosómico 18S/análisis , ADN Protozoario/análisisRESUMEN
Directly-Funded (DF) home care allows users to organize and purchase their own care services and is expanding globally. Little is known about the career pathways of home care workers. Our study asks, what experiences and factors do home care workers consider when choosing a work setting? And, specifically, what influences their decisions to work directly for their clients? Framed with Cranford's (2020) flexibility-security matrix for analyzing home care dynamics, we remotely interviewed 20 home care workers in two Canadian provinces. Three team members conducted axial coding and thematic analysis using Dedoose software. We identified personal and material factors at the intimate and labor market level that workers weigh when choosing whether to work for an agency or directly for a client. At the intimate level, workers value the flexibility, autonomy, and respect facilitated in care relations when working directly for a client. At the labor market level, agencies provide better job security and the benefit of supervisory support but lower wages. Additionally, as care work often serves as a stepping stone for immigration and citizenship agency positions are considered a more "legitimate" option than working directly for a client. Our study shows that workers directly employed by their clients enjoy more flexibility but lack security, whereas agency employed workers risk immediate reductions in working conditions in exchange for limited improvements in safety and supervision and, like other frontline care work, DF home care represents a key career pathway for immigrants with previous experience in health and social care settings.
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Servicios de Atención de Salud a Domicilio , Auxiliares de Salud a Domicilio , Investigación Cualitativa , Salarios y Beneficios , Humanos , Femenino , Masculino , Canadá , Persona de Mediana Edad , Adulto , Entrevistas como AsuntoRESUMEN
Community surveillance surveys offer an opportunity to obtain important and timely public health information that may help local municipalities guide their response to public health threats. The objective of this paper is to present approaches, challenges, and solutions from SARS-CoV-2 surveillance surveys conducted in different settings by 2 research teams. For rapid assessment of a representative sample, a 2-stage cluster sampling design was developed by an interdisciplinary team of researchers at Oregon State University between April 2020 and June 2021 across 6 Oregon communities. In 2022, these methods were adapted for New York communities by a team of veterinary, medical, and public health practitioners. Partnerships were established with local medical facilities, health departments, COVID-19 testing sites, and health and public safety staff. Field staff were trained using online modules, field manuals describing survey methods and safety protocols, and in-person meetings with hands-on practice. Private and secure data integration systems and public awareness campaigns were implemented. Pilot surveys and field previews revealed challenges in survey processes that could be addressed before surveys proceeded. Strong leadership, robust trainings, and university-community partnerships proved critical to successful outcomes. Cultivating mutual trust and cooperation among stakeholders is essential to prepare for the next pandemic.
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OBJECTIVES: Cancer is a leading cause of death among people living with intellectual or developmental disabilities (IDD). There is little empirical evidence documenting survival or comparing outcomes to those without IDD. This study investigated the association between IDD and cancer survival among adults with breast (female), colorectal, or lung cancer. METHODS: A population-based retrospective cohort study was conducted in Ontario, Canada, with routinely collected data. Patients with breast, colorectal, or lung cancer were included (2007â2019). IDD status before cancer was determined using an established administrative data algorithm. The outcomes of interest included death from any cause and death from cancer. Cox proportional hazards models and competing events analyses using multivariable cause-specific hazards regression were completed. Analyses were stratified by cancer type. Interactions with age, sex, and stage at diagnosis, as well as sensitivity analyses, were completed. RESULTS: The final cohorts included 123,695 breast, 98,809 colorectal, and 116,232 lung cancer patients. Individuals with IDD experienced significantly worse survival than those without IDD. The adjusted hazard ratios of all-cause death were 2.74 (95% CI 2.41â3.12), 2.42 (95% CI 2.18â2.68), and 1.49 (95% CI 1.34â1.66) times higher for breast, colorectal, and lung cancer patients with IDD relative to those without. These findings were consistent for cancer-specific deaths. With few exceptions, worse survival for people with IDD persisted regardless of stage at diagnosis. CONCLUSION: People with IDD experienced worse cancer survival than those without IDD. Identifying and intervening on the factors and structures responsible for survival disparities is imperative.
RéSUMé: OBJECTIFS: Le cancer est l'une des principales causes de mortalité chez les personnes vivant avec des déficiences intellectuelles ou des troubles du développement (DI/TD). Il y a peu de preuves empiriques décrivant la survie de ces personnes lorsqu'elles sont atteintes d'un cancer ou comparant leurs résultats à ceux des personnes sans DI/TD. Notre étude porte sur l'association entre les DI/TD et la survie au cancer chez les adultes atteints de cancer du sein (femmes), du colorectum ou du poumon. MéTHODE: Une étude de cohorte rétrospective populationnelle a été menée en Ontario, au Canada, à l'aide de données recueillies systématiquement. Nous avons inclus les patientes et les patients atteints de cancer du sein, du colorectum ou du poumon (2007â2019). Nous avons identifié la présence des DI/TD avant le cancer à l'aide d'un algorithme de traitement de données administratives reconnu. Les résultats d'intérêt étaient les décès de toutes causes et les décès dus au cancer. Nous avons appliqué des modèles des risques proportionnels de Cox et des analyses des événements concurrents en utilisant la régression multivariée des risques par cause. Nos analyses ont été stratifiées selon le type de cancer. Nous avons tenu compte des interactions avec l'âge, le sexe et le stade au diagnostic et effectué des analyses de sensibilité. RéSULTATS: Les cohortes finales ont inclus 123 695 personnes atteintes de cancer du sein, 98 809 atteintes de cancer colorectal et 116 232 atteintes de cancer du poumon. La survie des sujets ayant des DI/TD a été significativement moins bonne que celle des sujets sans DI/TD. Les rapports de risques instantanés ajustés pour les décès de toutes causes étaient 2,74 fois (IC de 95 % 2,41â3,12), 2,42 fois (IC de 95 % 2,18â2,68) et 1,49 fois (IC de 95 % 1,34â1,66) plus élevés chez les personnes atteintes de cancer du sein, du colorectum et du poumon et ayant des DI/TD que chez les personnes sans DI/TD. Ces constatations ressortent pour tous les décès attribuables à des cancers particuliers. Avec peu d'exceptions, la survie moins bonne pour les personnes ayant des DI/TD persistait quel que soit le stade au moment du diagnostic. CONCLUSION: La survie au cancer était moins bonne chez les personnes ayant des DI/TD que chez celles n'ayant pas de DI/TD. Il est impératif d'identifier les facteurs et les structures responsables de ces disparités dans la survie et d'intervenir en conséquence.
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Neoplasias Colorrectales , Neoplasias Pulmonares , Adulto , Niño , Humanos , Femenino , Estudios Retrospectivos , Discapacidades del Desarrollo , Ontario/epidemiologíaRESUMEN
BACKGROUND: Maximizing quality of life (QoL) is a major goal of care for people with dementia in nursing homes (NHs). Social determinants are critical for residents' QoL. However, similar to the United States and other countries, most Canadian NHs routinely monitor and publicly report quality of care, but not resident QoL and its social determinants. Therefore, we lack robust, quantitative studies evaluating the association of multiple intersecting social determinants with NH residents' QoL. The goal of this study is to address this critical knowledge gap. METHODS: We will recruit a random sample of 80 NHs from 5 Canadian provinces (Alberta, British Columbia, Manitoba, Nova Scotia, Ontario). We will stratify facilities by urban/rural location, for-profit/not-for-profit ownership, and size (above/below median number of beds among urban versus rural facilities in each province). In video-based structured interviews with care staff, we will complete QoL assessments for each of ~ 4,320 residents, using the DEMQOL-CH, a validated, feasible tool for this purpose. We will also assess resident's social determinants of QoL, using items from validated Canadian population surveys. Health and quality of care data will come from routinely collected Resident Assessment Instrument - Minimum Data Set 2.0 records. Knowledge users (health system decision makers, Alzheimer Societies, NH managers, care staff, people with dementia and their family/friend caregivers) have been involved in the design of this study, and we will partner with them throughout the study. We will share and discuss study findings with knowledge users in web-based summits with embedded focus groups. This will provide much needed data on knowledge users' interpretations, usefulness and intended use of data on NH residents' QoL and its health and social determinants. DISCUSSION: This large-scale, robust, quantitative study will address a major knowledge gap by assessing QoL and multiple intersecting social determinants of QoL among NH residents with dementia. We will also generate evidence on clusters of intersecting social determinants of QoL. This study will be a prerequisite for future studies to investigate in depth the mechanisms leading to QoL inequities in LTC, longitudinal studies to identify trajectories in QoL, and robust intervention studies aiming to reduce these inequities.
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Demencia , Calidad de Vida , Humanos , Determinantes Sociales de la Salud , Casas de Salud , Demencia/diagnóstico , Demencia/epidemiología , Demencia/terapia , AlbertaRESUMEN
INTRODUCTION: Olfactory dysfunction (OD) is common and carries significant personal and societal burden of disease. Accurate assessment of olfaction is required for good clinical care and affords patients insight into their condition. However, the accuracy of assessment varies with technique used, and there is presently little standardisation of clinical practice. We therefore aimed to determine experience of and preferences for olfactory assessment in healthcare-seeking adults. METHODS: An anonymous patient co-produced survey was developed in collaboration with a UK-based OD charity. Distribution was via their social media patient forum. "Healthcare seeking" adults (i.e., who had undergone olfactory assessment by a healthcare professional [any care level/speciality] or may do so in the future) were included. RESULTS: 576 people (88.5% female, mean 46 years) responded. Hyposmia, parosmia, and retronasal OD were most frequently reported. 55.2% had been assessed by a healthcare professional - GP most commonly, followed by ENT. Importantly, only 15.6% and 16.9% of respondents had undergone systematic assessment with smell tests or symptom questionnaires, respectively. Most respondents had not undergone imaging. Mean satisfaction was higher in those seen by ENT. Interestingly, respondents prioritise orthonasal odour identification over other forms of smell test. Unfortunately, many felt that healthcare professionals (across specialities) were dismissive towards OD and lacked appropriate knowledge of both its pathophysiology and effects. We propose simple steps that can be taken to improve olfactory assessment, including education and establishment of robust referral networks. CONCLUSION: We hope these results and supporting practical recommendations will inform future service planning, funding allocation and research, as well as better aligning patient and clinician priorities.
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Trastornos del Olfato , Olfato , Adulto , Humanos , Femenino , Masculino , Olfato/fisiología , Trastornos del Olfato/diagnóstico , Odorantes , Encuestas y Cuestionarios , Evaluación del Resultado de la Atención al PacienteRESUMEN
Home care is the preferred care option for most people who need support; yet abuse exists in these settings toward both home care workers and clients. There are no existing reviews that assess the scope of current research on abuse in home care, and tangentially related reviews are dated. For these reasons, a scoping review is warranted to map the current state of research on abuse in home care and examine current interventions in this field. Databases selected for searching were Medline and EMBASE on OVID, Scopus, and the following databases in EBSCOhost: Academic Search Complete, AgeLine, and Cumulative Index to Nursing and Allied Health Literature. Records were included if: (a) they were written in English; (b) the participants were home care workers or clients age 18 years or older; (c) they were published in journals; (d) they undertook empirical research; and (e) they were published within the last 10-year period. Following Graham et al. (2006), the 52 included articles are categorized as either knowledge inquiry or as intervention studies. We find three themes among knowledge inquiry studies: (1) prevalence and types of abuse in home care, (2) abuse in the context of living with dementia, and (3) working conditions and abuse. Analysis from the intervention studies suggest that not all organizations have specific policies and practices to prevent abuse, and no existing interventions to protect the well-being of clients were identified. Findings from this review can inform up-to-date practice and policymaking to improve the health and well-being of home care clients and workers.
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Servicios de Atención de Salud a Domicilio , Humanos , AdolescenteRESUMEN
BACKGROUND: Cancer is a leading cause of death among people living with intellectual or developmental disabilities (IDD). Although studies have documented lower cancer screening rates, there is limited epidemiological evidence quantifying potential diagnostic delays. This study explores the risk of metastatic cancer stage for people with IDD compared to those without IDD among breast (female), colorectal, and lung cancer patients in Canada. METHODS: Separate population-based cross-sectional studies were conducted in Ontario and Manitoba by linking routinely collected data. Breast (female), colorectal, and lung cancer patients were included (Manitoba: 2004-2017; Ontario: 2007-2019). IDD status was identified using established administrative algorithms. Modified Poisson regression with robust error variance models estimated associations between IDD status and the likelihood of being diagnosed with metastatic cancer. Adjusted relative risks were pooled between provinces using random-effects meta-analyses. Potential effect modification was considered. RESULTS: The final cohorts included 115,456, 89,815, and 101,811 breast (female), colorectal, and lung cancer patients, respectively. Breast (female) and colorectal cancer patients with IDD were 1.60 and 1.44 times more likely to have metastatic cancer (stage IV) at diagnosis compared to those without IDD (relative risk [RR], 1.60; 95% confidence interval [CI], 1.16-2.20; RR, 1.44; 95% CI, 1.24-1.67). This increased risk was not observed in lung cancer. Significant effect modification was not observed. CONCLUSIONS: People with IDD were more likely to have stage IV breast and colorectal cancer identified at diagnosis compared to those without IDD. Identifying factors and processes contributing to stage disparities such as lower screening rates and developing strategies to address diagnostic delays is critical.
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Neoplasias Colorrectales , Discapacidades del Desarrollo , Neoplasias Pulmonares , Adulto , Femenino , Humanos , Neoplasias Colorrectales/complicaciones , Neoplasias Colorrectales/diagnóstico , Neoplasias Colorrectales/epidemiología , Estudios Transversales , Neoplasias Pulmonares/complicaciones , Neoplasias Pulmonares/diagnóstico , Neoplasias Pulmonares/epidemiología , Ontario/epidemiología , Masculino , Neoplasias de la MamaRESUMEN
BACKGROUND: Cancer is a leading cause of death among adults living with intellectual or developmental disabilities (IDD). However, few epidemiological studies exist worldwide quantifying inequalities in cancer stage at diagnosis and survival for people with IDD relative to those without IDD. METHODS: A population-based, retrospective cohort study was conducted using provincial health and social administrative data in Manitoba, Canada. Adults (≥18 years) with a cancer diagnosis between 2004 and 2017 were included. Lifetime IDD was identified before the cancer diagnosis using an established algorithm. Modified Poisson regression with robust error variance was used to estimate the association between IDD status and metastatic cancer at diagnosis. Multivariable Cox proportional hazards analyses were used to the effect of IDD on overall survival following the cancer diagnosis. RESULTS: The staging and prognosis cohorts included 62,886 (n = 473 with IDD) and 74,143 (n = 592 with IDD) cancer patients, respectively. People living with IDD were significantly more likely to be diagnosed with metastatic cancer and die following their cancer diagnosis compared to those without IDD (RR=1.20; 95 % CI 1.05-1.38; HR= 1.53; 95 % CI 1.38-1.71). Significant heterogeneity by sex was identified for cancer survival (p = 0.005). DISCUSSION: People with IDD had more advanced cancer stage at diagnosis and worse survival relative to those without IDD. Identifying and developing strategies to address the factors responsible that contribute to these disparities is required for improving patient-centred cancer care for adults with IDD.
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Discapacidades del Desarrollo , Neoplasias , Adulto , Niño , Humanos , Estadificación de Neoplasias , Manitoba/epidemiología , Estudios Retrospectivos , CanadáRESUMEN
BACKGROUND: Medical invalidation is a well-documented phenomenon in the literature on chronic illnesses, yet there is a paucity of research capturing the perspectives of young adults living with chronic illnesses, and especially of those who are gender diverse or from groups that face broader societal marginalization. Our study sought to answer the following question: How do young women and nonbinary adults living with chronic illnesses characterize their experiences of medical invalidation and its impact on their health and well-being? METHODS: This was a patient-oriented qualitative study informed by feminist disability theory. Eligibility requirements included self-identifying as having a chronic illness, self-identifying as a woman or nonbinary person receiving health care in Manitoba, and being between the ages of 18 and 35 years. Participants took part in online arts-based workshops and subsequent focus group discussion in November 2021. RESULTS: Eight women and 2 nonbinary individuals participated. Medical invalidation was experienced by all of the participants at different points in their illness journeys and took a variety of forms depending on their social location and their particular illness, positioning invalidation as an issue of in/visibility. We identified several consequences of medical invalidation, including internalizing invalidation, overcompensating for their illness, avoiding care and, ultimately, symptom intensification. We also present participants' recommendations to avoid medical invalidation. INTERPRETATION: This study provides insight into the phenomenon of medical invalidation, understood as the act of dismissing, minimizing or otherwise not taking patient concerns seriously. We suggest person-centred care may not be enough, and critical reflexivity may help avoid unintentionally invalidating patient experiences.
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Ultraviolet (UV) radiation systems, commonly used to disinfect surfaces, drinking water, and air, stem from historical practice to use sunlight to disinfect household items after contagious illness. Currently, it is still recommended in viral outbreak contexts such as COVID-19, Ebola, and Marburg to expose soft surfaces to sunlight after washing with detergent or disinfecting with chlorine. However, sunlight that reaches the Earth's surface is in the UVA/UVB wavelengths, whereas UV disinfection systems typically rely on biocidal UVC. Our goal was to fill the evidence gap on the efficacy of sunlight disinfection on surface materials common in low-resource healthcare settings by seeding four surfaces (stainless steel, nitrile, tarp, cloth) with three microorganisms (viral surrogate bacteriophages Phi6 and MS2 and Escherichia coli bacteria), with and without soil load, and exposing to three sunlight conditions (full sun, partial sun, cloudy). We conducted 144 tests in triplicate and found: solar radiation averaged 737 W/m2 (SD = 333), 519 W/m2 (SD = 65), and 149 W/m2 (SD = 24) for full sun, partial sun, and cloudy conditions; significantly more surfaces averaged ≥ 4 log10 reduction value (LRV) for Phi6 than MS2 and E. coli (P < 0.001) after full sun exposure, and no samples achieved ≥ 4 LRV for partial sun or cloudy conditions. On the basis of our results, we recommend no change to current protocols of disinfecting materials first with a 0.5% chlorine solution then moving to sunlight to dry. Additional field-based research is recommended to understand sunlight disinfection efficacy against pathogenic organisms on healthcare relevant surfaces during actual outbreak contexts.
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COVID-19 , Purificación del Agua , Humanos , Luz Solar , Desinfección/métodos , Escherichia coli , Cloro , Rayos Ultravioleta , Purificación del Agua/métodosRESUMEN
Genetic assistant positions are now widely integrated in genetic services to address genetic counselor shortages and ultimately improve efficiency. While over 40% of genetic counselors report working with a genetic assistant ("NSGC Professional Status Survey: Work Environment," 2022), there is limited information about the genetic assistant workforce. The present study surveyed 164 genetic assistants and 139 individuals with experience working with genetic assistants (specifically genetic counselors, residents, geneticists, and administrative staff). Information was collected about genetic assistant demographics, positions, roles and responsibilities, and career paths. The data revealed that the genetic assistant workforce is demographically similar to the genetic counselor workforce and that most genetic assistants intend to pursue a career in genetic counseling. The genetic assistant positions were heterogeneous in terms of the roles and responsibilities assigned, even when separated by work setting. Lastly, participants reported that there were at least 144 genetic assistants across their institutions, a number that has likely grown since the time of the survey. The findings from this study highlight important opportunities for future research and focus, especially development of a scope of practice and competencies for genetic assistants, as well as the potential to use genetic assistant positions as an avenue to improve diversity within the genetic counseling workforce.
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Cholera outbreaks primarily occur in areas lacking adequate water, sanitation, and hygiene (WASH), and infection can cause severe dehydration and death. As individuals living near cholera cases are more likely to contract cholera, case-area targeted interventions (CATI), where a response team visits case and neighbor households and conducts WASH and/or epidemiological interventions, are increasingly implemented to interrupt cholera transmission. As part of a multi-pronged evaluation on whether CATIs reduce cholera transmission, we compared two organizations' standard operating procedures (SOPs) with information from key informant interviews with 26 staff at national/headquarters and field levels who implemented CATIs in Nigeria in 2021. While organizations generally adhered to SOPs during implementation, deviations related to accessing case household and neighbor household selection were made due to incomplete line lists, high population density, and insufficient staffing and materials. We recommend reducing the CATI radius, providing more explicit context-specific guidance in SOPs, adopting more measures to ensure sufficient staffing and supplies, improving surveillance and data management, and strengthening risk communication and community engagement. The qualitative results herein will inform future quantitative analysis to provide recommendations for overall CATI implementation in future cholera responses in fragile contexts.
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Cólera , Humanos , Cólera/epidemiología , Cólera/prevención & control , Nigeria/epidemiología , Brotes de Enfermedades/prevención & control , Agua , Saneamiento/métodosRESUMEN
BACKGROUND: Directly-funded home care (DF) provides government funds to people who need assistance with the activities of daily living, allowing them to arrange their own services. As programs expand globally, many allow DF clients to hire home care agencies to organize their services rather than finding their own workers. In Canada, half of the DF home care programs allow users to purchase agency services. The goal of this research is to describe the role of agency providers in DF home care in Canada and consider potential equity implications for service access from the perspectives of clients and families. METHODS: Framed with intersectionality, the study included online focus groups with families and clients (n = 56) in the two Canadian provinces of Alberta and Manitoba between June 2021-April 2022. All transcripts underwent qualitative thematic analysis using open and axial coding techniques. Each transcript was analyzed by two of three possible independent coders using Dedoose qualitative analysis software. RESULTS: The article presents five thematic findings. First, the focus groups document high rates of satisfaction with the care regardless of whether the client uses agency providers. Second, agency providers mediate some of the administrative barriers and emotional strain of using DF home care, and this is especially important for family caregivers who are working or have additional care responsibilities. Third, there are out-of-pocket expenses reported by most participants, with agency clients describing administrative fees despite lower pay for the frontline care workers. Fourth, agencies are not generally effective for linguistic and/or cultural matching between workers and families. Finally, we find that DF care programs cannot compensate for a limited informal support network. CONCLUSIONS: Clients and families often intentionally choose DF home care after negative experiences with other public service options, yet the results suggest that in some Canadian contexts, DF home care is a privilege only afforded to some. Given the growing inequalities that exist in Canadian society, all public home care options must be open to all who need it, irrespective of ability to pay, degree of social support, or competence in the English language.
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Actividades Cotidianas , Servicios de Atención de Salud a Domicilio , Humanos , Canadá , Cuidadores , Manitoba , AlbertaRESUMEN
Parosmia is a well-documented consequence of smell loss associated with Covid 19. Those who experience this qualitative olfactory disorder during recovery find that the odour of common foods and household items is distorted, and the experience can range from merely altered to profoundly disgusting. This can lead to a greatly altered relationship with food, including the physical symptoms of loss of appetite, nausea, vomiting, as well as wider reaching issues such as withdrawal from social situations, emotional distancing from others in their close social circles, and anhedonia. There is at present no known cure or intervention to mitigate the condition. The AbScent Parosmia and Phantosmia support group on Facebook became an important resource for patients with this condition during the early part of the pandemic, and the crowd-sourcing of experiences, tips and peer-to-peer advice became a valuable source of information for the community as well as researchers trying to understand the condition. Using protocols described in earlier literature on the use of social media for qualitative research, this paper provides information on the management of parosmia based on the experiences of over 30k patients in the AbScent Parosmia and Phantosmia group on Facebook and 6k member of the AbScent Network.
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Many countries adopted comprehensive national initiatives to promote equity in higher education with the goal of transforming the culture of research. Major health research funders are supporting this work through calls for projects that focus on equity, resulting in a proliferation of theoretical frameworks including "intersectionality," "health equity," and variations of equity, diversity and inclusion, or EDI. This commentary is geared at individual principal investigators and health research teams who are developing research proposals and want to consider equity issues in their research, perhaps for the first time. We present histories and definitions of three commonly used frameworks: intersectionality, health equity, and EDI. In the context of health research, intersectionality is a methodology (a combination of epistemology and techniques) that can identify the relationships among individual identities and systems of oppression; however, it should also be used internally by research teams to reflect on the production of knowledge. Health equity is a societal goal that operationalizes the social determinants of health to document and address health disparities at the population level. EDI initiatives measure and track progress within organizations or teams and are best suited to inform the infrastructure and human resourcing "behind the scenes" of a project. We encourage researchers to consider these definitions and strive to tangibly move health research towards equity both in the topics we study and in the ways we do research.