96 research outputs found
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Leprosy, domesticity, and patient protest : the social context of a patients' rights movement in mid-century America
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Changing the paradigm for HIV testing : the end of exceptionalism
The Centers for Disease Control and Prevention (CDC) is poised to issue new recommendations for testing for HIV in adults, adolescents, and pregnant women. Frustrated that more than 25 percent of Americans with HIV infection are unaware of their status and that almost 40 percent of those with newly diagnosed AIDS discover that they are infected less than a year before diagnosis, officials have proposed that HIV screening be routinely offered in all health care settings. The CDC already recommends routine testing among high-risk groups and in high-prevalence settings. The radical departure is the extension of routine testing to the entire population and the reconceptualization of the requirements for consent. Patients would be told that HIV testing was a routine part of care and given the opportunity to opt out. According to the CDC, specific signed consent would no longer be required, because “general consent for medical care is sufficient to encompass consent for HIV testing.
Back to the future? diabetes, HIV, and the boundaries of public health
The control of infectious diseases has traditionally fallen to public health and the clinical care of chronic diseases to private medicine. In New York City, however, the Department of Health and Mental Hygiene (DOHMH) has recently sought to expand its responsibilities in the oversight and management of chronic-disease care. In December 2005, in an effort to control epidemic rates of diabetes, the DOHMH began implementing a bold new plan for increased disease surveillance through electronic, laboratory-based reporting of A1C test results (a robust measure of blood-sugar levels). The controversy A1C reporting produced was relatively contained, but when Dr. Thomas Frieden, New York City health commissioner, called for the state to begin tracking viral loads and drug resistance among patients with HIV, both the medical community and a wider public took notice and have started to grapple with the meaning of expanded surveillance. In the context of the past century of medical surveillance in America, we analyze the current debates, focusing first on diabetes and then HIV. We identify the points of contention that arise from the city's proposed blend of public health surveillance, disease management, and quality improvement and suggest an approach to balancing the measures' perils and promises
Covid-19 and the lost hidden curriculum: locating an evolving narrative ecology of Schools-in-Covid
The Covid-19 pandemic brought seismic changes to children and families, with schools at the forefront of the daily battle to maintain learning. We report on our reflexive thematic analysis of data collected with 28 participants in 14 schools in England during the summer of 2021, following two extensive national lockdowns, and two transition points of returning to school under Covid safety measures. Our data reflects an emerging narrative ecology of Schools-in-Covid, developing as the pandemic continued to unfold for children and families, schools, policy makers and ourselves, in a co-construction of what this pandemic has brought to our lives. We present our findings as a reportage, as our collective experience continues to unfold. Our superordinate themes re-position the UK Government priority of academic catch up as secondary to mental health, and argue the re-establishment of the hidden curriculum was the main vehicle for social and emotional learning (SEL) and wellbeing through direct instruction, modelling and practice, typically associated with improved attitudes about the self, others and school and with consequential higher attainment. We report a partial inversion of expectations; rather than a heavy emphasis towards widening disadvantage, our participants report some benefit to vulnerable children and young people who gained from a changed in-person learning environment, and overwhelming distress to those deemed less vulnerable. Our findings identify Schools in the Community, Care before Curriculum, Agility (adapt, survive and thrive), and Reflective and Responsive, as the key aspects of an emerging narrative ecology of Schools-in-Covid
Evaluating diabetes mobile applications for health literate designs and functionality, 2014
INTRODUCTION: The expansion of mobile health technologies, particularly for diabetes-related applications (apps), grew exponentially in the past decade. This study sought to examine the extent to which current mobile apps for diabetes have health literate features recommended by participants in an Institute of Medicine Roundtable and compare the health literate features by app cost (free or not). METHODS: We used diabetes-related keywords to identify diabetes-related apps for iOS devices. A random sample of 110 apps (24% of total number of apps identified) was selected for coding. The coding scheme was adapted from the discussion paper produced by participants in the Institute of Medicine Roundtable. RESULTS: Most diabetes apps in this sample addressed diabetes management and therapeutics, and paid apps were more likely than free apps to use plain language strategies, to label links clearly, and to have at least 1 feature (a “back” button) that helps with the organization. CONCLUSION: Paid apps were more likely than free apps to use strategies that should be more useful and engaging for people with low health literacy. Future work can investigate ways to make free diabetes mobile apps more user-friendly and accessible
Developing the ethics of implementation research in health
Implementation research (IR) is growing in recognition as an important generator of practical knowledge that can be translated into health policy. With its aim to answer questions about how to improve access to interventions that have been shown to work but have not reached many of the people who could benefit from them, IR involves a range of particular ethical considerations that have not yet been comprehensively covered in international guidelines on health research ethics. The fundamental ethical principles governing clinical research apply equally in IR, but the application of these principles may differ depending on the IR question, context, and the nature of the proposed intervention. IR questions cover a broad range of topics that focus on improving health system functioning and improving equitable and just access to effective health care interventions. As such, IR designs are flexible and often innovative, and ethical principles cannot simply be extrapolated from their applications in clinical research. Meaningful engagement with all stakeholders including communities and research participants is a fundamental ethical requirement that cuts across all study phases of IR and links most ethical concerns. Careful modification of the informed consent process may be required in IR to permit study of a needed intervention. The risks associated with IR may be difficult to anticipate and may be very context-specific. The benefits of IR may not accrue to the same groups who participate in the research, therefore justifying the risks versus benefits of IR may be ethically challenging. The expectation that knowledge generated through IR should be rapidly translated into health policy and practice necessitates up-front commitments from decision-makers to sustainability and scalability of effective interventions. Greater awareness of the particular ethical implications of the features of IR is urgently needed to facilitate optimal ethical conduct of IR and uniform ethical review
Sex-specific associations of basal steroid hormones and neuropeptides with Conduct Disorder and neuroendocrine mediation of environmental risk
Conduct Disorder (CD) is characterized by severe aggressive and antisocial behavior. The stress hormone system has frequently been investigated as a neurobiological correlate of CD, while other interacting neuroendocrine biomarkers of sex hormone or neuropeptide systems have rarely been studied, especially in females. We examined multiple basal neuroendocrine biomarkers in female and male adolescents with CD compared to healthy controls (HCs), and explored whether they mediate effects of environmental risk factors on CD. Within the FemNAT-CD study, salivary cortisol, alpha-amylase, testosterone, dehydroepiandrosterone-sulfate (DHEA-S), estradiol, progesterone, oxytocin, and arginine-vasopressin were measured under basal conditions in 166 pubertal adolescents with CD, and 194 sex-, age-, and puberty-matched HCs (60% females, 9-18 years). Further, environmental risk factors were assessed. Single hormone analyses showed higher DHEA-S, and lower estradiol and progesterone levels in both females and males with CD relative to HCs. When accounting for interactions between neuroendocrine systems, a male-specific sex hormone factor (testosterone/DHEA-S) predicted male CD, while estradiol and a stress-system factor (cortisol/alpha-amylase) interacting with oxytocin predicted female CD. Estradiol, progesterone, and oxytocin partly explained associations between early environmental risk and CD. Findings provide evidence for sex-specific associations between basal neuroendocrine measures and CD. Especially altered sex hormones (androgen increases in males, estrogen reductions in females) robustly related to CD, while basal stress-system measures did not. Early environmental risk factors for CD may act partly through their effects on the neuroendocrine system, especially in females. Limitations (e.g., basal neuroendocrine assessment, different sample sizes per sex, pubertal participants, exploratory mediation analyses) are discussed
Pediatric pan-central nervous system tumor analysis of immune-cell infiltration identifies correlates of antitumor immunity
Here, using methylCIBERSORT, the authors characterize the tumour-immune microenvironment of paediatric central nervous system (CNS) tumours and its association with tumour type and prognosis. These findings suggest that immuno-methylomic profiling may inform immunotherapy approaches in paediatric patients with CNS tumour
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