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Guidelines for the Creation of Accessible Consent Materials and Procedures: Lessons from Research with Autistic People and People with Intellectual Disability
Get PDFInformed, voluntary, ongoing consent is a central tenet of ethical research. However, consent processes are prone to exclusionary practices and inaccessibility. Consent materials are often too long and complex to foster understanding and ensure that people make truly informed decisions to participate in research. While this complexity is problematic for all people, these challenges are compounded for autistic people and people with intellectual disability. Consent materials and procedures rarely incorporate accommodations for processing and communication differences common in autism and intellectual disability. Failure to provide such accommodations ultimately threatens the conduct of ethical research. We describe lessons learned across multiple major U.S. research institutions that improved informed consent materials and procedures, with the goal of fostering responsible inclusion in research for autistic people and people with intellectual disability. We used these alternative materials and procedures in multiple research projects with samples of autistic people and people with intellectual disability. Each contributing team partnered with university human research participant protections personnel, accessibility experts, community members, and researchers to develop rigorous procedures for improving the readability and accessibility of informed consent materials. We present guidelines for designing consent materials and procedures and assert that participatory methods are vital to the success of ongoing accessibility initiatives. Adoption of understandable consent materials and accessible consent procedures can cultivate more equitable, respectful, and inclusive human research practices. Future work should expand on this work to design inclusive practices for populations with additional considerations
Comparing CPR ventilation strategies within Tualatin Valley Fire and Rescue using a retrospective observational cohort study
Get PDFStudy Objective: This was a registry based retrospective observational cohort study of roughly 1,150 cardiac arrest cases transported by the Tualatin Valley Fire and Rescue emergency medical service (EMS) agency to hospitals in the Portland area from 2018-2019 and from 2022-2023 to compare cardiopulmonary resuscitation (CPR) ventilation policy changes between these two years from continuous chest compressions (CCC) to a compression ventilation ratio of 30:2. Hospital outcomes were linked to EMS records through trauma registries, state discharge and emergency department data. The primary outcome was survival to discharge, and the secondary outcome was positive neurological outcome (Cerebral performance category score of 1 or 2). We performed propensity score matching to control for covariates including witnessed cardiac arrest, location of cardiac arrest, bystander CPR or defibrillation, time to EMS arrival, time to advanced airway, time to EMS provided CPR, cardiac arrest etiology, defibrillation shocks given in the first 5 minutes of CPR, doses of epinephrine given in the first 5 minutes of CPR, and doses of naloxone given in the first 5 minutes of CPR.
Results: 539 patients met the inclusion criteria and 207 were successfully matched with a standard difference of
Conclusions: In a single EMS system comparing cardiac arrest cases from two, two year periods, there was no detectable difference in survival to discharge or neurologic outcome between CPR ventilation policies that promote CCC or 30:2 CPR. This is consistent with previous research by the Resuscitation Outcomes Consortium and suggests further research is needed in order to determine the optimal CPR ventilation strategy. However, it does indicate that no association was observed between survival to discharge and switching CPR ventilation strategy from CCC to 30:2
Integrating the Interconnections Between Groundwater and Land Surface Processes Through the Coupled NASA Land Information System and Parflow Environment
Get PDFUnderstanding the interactions between the atmosphere, the land, and the subsurface is fundamental to hydrology and is critical for a better assessment of the impacts of climate change and human management on hydrological systems. However, many land surface models simplify the subsurface hydrology and thereby these interactions. In this study, we couple the land surface model Noah‐MP included in the NASA Land Information System (LIS) with the integrated hydrologic model ParFlow (ParFlow‐LIS) using the Earth System Modeling Framework (ESMF) and the National United Operational Prediction Capability (NUOPC). This coupling improves the simulation of water and energy cycle processes by adding the three‐dimensional variably saturated and heterogeneous flow in the subsurface using sophisticated and nonlinear physics‐based equations as well as the advances in satellite remote sensing‐based data assimilation of the land surface, thereby benefiting the integrated hydrologic modeling and data assimilation community. We use the High Plains aquifer, located in the central United States, as a testbed to evaluate the coupled ParFlow‐LIS system. The new ParFlow‐LIS system accounts for the effects of topographically driven flows on the land surface, producing more fine‐scale patterns of land surface states and fluxes than standalone LIS. In addition, ParFlow‐LIS enables the consideration of the effect of subsurface water storage on evapotranspiration. This is particularly important in areas and times with dry soils, such as during drought conditions or in the presence of a cone of depression due to pumping
Working Paper No. 90, Social Hierarchies in the Music Industry and Thorstein Veblen\u27s Understanding of Institutions
Get PDFThis inquiry seeks to establish that Thorstein Veblen’s understanding of institutions could be used to offer insights into social hierarchies found within the music industry. Institutions, as viewed by Veblen, are structures that are influenced by and extensions of habits that provide an understanding of human behavior. Society creates standards which determine the way that the population operates, setting levels of what is considered as correct and incorrect behaviors. Institutions have a way of altering the way society is governed, setting expectations and new mindsets of how people should interact with each other. Through the introduction of new technologies, these standards can also be broken and replaced with new and evolving institutions. This idea bleeds into the operations of other industries, such as the music industry, where norms influenced by old institutions set the tone for how artists, managers and employees work within the business. I work to inquire into the industry of music while using Veblen\u27s perspective on institutions, as a way to rationalize the structure of social hierarchies within the industry. In addition, this inquiry seeks to explore the ways that music industry institutions have slowly been dismantled through new waves of technology
Extant Life Detection Using Label-Free Video Microscopy in Analog Aquatic Environments
Get PDFThe ability of microbial active motion, morphology, and optical properties to serve as biosignatures was investigated by in situ video microscopy in a wide range of extreme field sites where such imaging had not been performed previously. These sites allowed for sampling seawater, sea ice brines, cryopeg brines, hypersaline pools and seeps, hyperalkaline springs, and glaciovolcanic cave ice. In all samples except the cryopeg brine, active motion was observed without any sample treatment. Active motion was observed in the cryopeg brines when samples were subjected to a temperature gradient above in situ. In general, levels of motility were low in the field samples collected at temperatures \u3c 4ºC. Non-motile cells could be distinguished from microminerals by differences in passive motion (e.g., density measured by sinking/floating), refractive index and/or absorbance, or morphology in the case of larger eukaryotes. Dramatic increases in the fraction of motile cells were seen with simple stimuli such as warming or the addition of L-serine. Chemotaxis and thermotaxis were also observed in select samples. An open-source, autonomous software package with computational requirements that can be scaled to spaceflight computers was used to classify the data. These results demonstrate the utility of volumetric light microscopy for life detection, but also suggest the importance of developing methods to stimulate cells in situ and process data using the restrictions imposed by mission bandwidth, as well as instruments to capture cell-like objects for detailed chemical analysis
Exploring Health Equity with Culturally Specific Providers of Permanent Supportive Housing
Get PDFChronic homelessness is an important public health issue. Permanent Supportive Housing (PSH) is a promising opportunity for transitioning people experiencing homelessness into housing, however there remain unaddressed racial inequities in service provision and outcomes. The aim of this study is to better understand the role of culturally specific (CS) providers of PSH in improving health equity. I analyzed interviews with CS PSH providers for themes related to health and healthcare. Providers spoke about the importance of connecting clients to healthcare. Providers stressed the importance of honesty and lived experience, highlighting the strong sense of responsibility to the community. Providers also elevated how this work comes with high levels of burnout and elevated training needs that would support them in advancing the health of their clients further
Introduction to the Special Issue on Verification and Validation of Source and Propagation Models for Underwater Sounda)
Get PDFThis joint Special Issue of JASA and JASA Express Letters focuses on underwater sound source and propagation modelling, both of ambient sound as well as sources of relevance to possible effects of sound on aquatic life, and corresponding acoustical metrics. Combining information on the sound field with information on a dose-effect relationship enables estimation of the potential effects. The Special Issue presents a collection of eighteen articles on the following topics: (1) verification of source and propagation models, (2) validation of source and propagation models, and (3) bioacoustical metrics for assessment of the risk of environmental effects. This special issue demonstrates the need for clear metrics and verification and validation protocols
College Outcomes for Young Adults with and Without Learning Disabilities and ADHD: Formal-Disability-Programming and Informal-Disability-Supports
Get PDFInequalities by disability status in college outcomes contribute to inequalities throughout adulthood in multiple domains. As the share of students with learning disabilities and/or ADHD increases on college campuses, research is needed on how best to support these undergraduates, both through formal and informal means. We integrate the social and medical models of disability with data on nearly 17,000 young adults in the US, who typically finished high school in 2013, and find that formal-disability-programming relates negatively to college enrollment but has no apparent bearing on college persistence. Among youth with similar sociodemographic backgrounds and comparable end of high school achievement levels, youth with a learning disability or ADHD who participate in special education during high school are less likely to enroll in college than youth with a learning disability or ADHD who do not. Multiple informal-disability-supports retain a significant relationship with college enrollment and persistence, even after accounting for important potential confounders. These supports may improve college outcomes because they demonstrate the relevance of education for careers (e.g., internships), build dominant social and cultural capital (e.g., high school counselors, career services), build human capital (e.g., college exam prep, academic support for college courses), and increase accessibility (e.g., online programs)
Game-Based Learning as a Dynamic System: A Review of the Literature
No full textGame-based learning (GBL) in its development as a field has found itself at an ever-increasing complexity with regard to theories, design elements, and outcomes that define it. It\u27s been long since proven that games produce learning and the ways in which this benefits educators and designers have broad applications, from direct game implementation to integrating GBL knowledge into non-game spaces. The density and complexity of design in GBL prove beneficial for learning opportunities, as the adaptability of design can create an almost infinite series of outcomes in a highly replicable manner. In this broad review, I attempt to display the ways in which elements across and within the field of GBL work in an interdependent system to produce learning. This serves either as an introduction to the field or a comprehensive summary for those familiar with it. Focusing on all elements of GBL in context with each other helps to explain and understand the exchanges that are constantly being made in the educational and design processes. As a subfield of educational research, the game design aspect adds another layer of systems making the question of what produces learning increasingly difficult to identify. Also prevalent are the issues in regard to financial and structural restrictions when making use of GBL technologies in classrooms as they are developed. This said, there are still a series of unexplored opportunities for research designs and interdisciplinary interactions that provide increasing opportunities to make use of successful and creative opportunities to engage learners in education
The Art of Memory: The Medieval Peutinger Map
No full textThe Peutinger map is an enigma: a twelfth-century map of the Roman Empire, it is secular and oddly shaped, its dimensions distorted to show Rome at the center of the world. Its creator, purpose, and provenance currently remain lost to history. Long considered by classicists to be a copy of a lost Roman original, the map has not been seriously examined by medievalists, possibly because it does not adhere to the Christian T-O style of medieval mappaemundi.
While other scholars have focused on what the Peutinger map reflects about ancient Rome, I have chosen to explore how the Peutinger map reflects the historical context and values of its twelfth-century creators. This paper argues that the twelfth-century Peutinger map is a product of its own time and place, inextricably linked with the cultural tumult and political upheaval of the long twelfth century (1050-1250 CE). By examining the cultural flowering of the twelfth-century renaissance and tracing the long series of conflicts between the Hohenstaufen kings of Germany and the papacy from the eleventh through the thirteenth centuries, I show how the cultural context into which the Peutinger map was born is critical to understanding its purpose and value as a piece of Hohenstaufen propaganda. By further examining the three personifications of cities on the Peutinger map--Rome, Constantinople, and Antioch--this thesis explores how the map’s maker synthesized a variety of classical and medieval references to create a vision of the world that uniquely depicted the German kings as the inheritors of ancient Rome