Adapting Participatory Action Research to Include Individuals with Intellectual and Developmental Disabilities during the COVID-19 Global Pandemic

Participatory action research (PAR), or the inclusion of those affected by the issues being studied, is a growing area of emphasis in disability research. The principles of PAR align with those of the disability rights movement, such that full inclusion and “nothing about us without us” extends as much to research as it does to any other area of life. Moreover, PAR allows for meaningful input from people with intellectual and developmental disabilities (I/DD), which enhances the likelihood that research results are relevant and important to the disability community. As research activity resumes and is adapted to the context of a global pandemic, it is crucial that a balance is struck to optimize the safety of individuals with I/DD without taking steps backwards from the progress towards more meaningful inclusion in research. Lessons learned from past participatory research projects have demonstrated that accommodations to enable equitable participation of individuals with IDD in the research process are crucial. COVID-19 has significantly affected the lives of individuals with I/DD directly; however, COVID-19 has also affected those with I/DD indirectly through the disruption to critical intervention and other clinical research. As research processes are adapted to align with COVID-19 guidelines, the inclusion of individuals with I/DD via PAR needs to be adapted as well. Recommendations for the continuation of PAR in the context of COVID-19 will be discussed as well as ways in which accommodations can be modified to this new context

Center on Disability Studies eNewsletter, June 2023

Welcome to our summer newsletter. In this issue we highlight many events and happenings sponsored by CDS during June and July that you don’t want to miss out on. Disability Pride Month is also celebrated each year in July. Disability Pride initially started as a day of celebration in 1990, the year that the Americans with Disabilities Act (ADA) was signed into law. It is also an opportunity to raise awareness about improving access and inclusion. The first official Disability Pride celebration occurred in 2015 to commemorate the ADA’s 25th anniversary and the Disability Pride Flag was originally designed in 2019 by Ann Magill, who with feedback within the disabled community, refined its visual elements in 2021 to be more accessible. You can read more about how the disability pride flag helps increase the community’s visibility at https://go.hawaii.edu/qEX

Disabled Parenting Project: A Participatory Action Model in Seeking Reproductive Justice

This breakout session will incorporate a multimedia format as a 12 minute video will be used to illustrate the unique paths to parenting pursued by the presenter. The video aims to spark discussion on biological parenthood for parents with genetic disabilities, adoption, and parenting policy

A standard set of outcome measures for the comprehensive assessment of osteogenesis imperfecta

BackgroundOsteogenesis Imperfecta (OI) is a genetic disorder also known as 'brittle bone disease'. The clinical manifestation of OI shows a wide variation. Therefore, care for patients with OI requires an interdisciplinary approach. The effectiveness of particular interventions and treatment protocols of interdisciplinary teams is not clear due to a non-standardized and wide variation of patient outcomes thus making the comparison of outcome measures available in the literature difficult. It is only by agreeing on a common, standard set of outcome measures for the comprehensive appraisal of OI that comparisons across interdisciplinary treatment centers for OI will be possible in the future.MethodsThe Key4OI international interdisciplinary working group of 27 members used a consensus-driven modified Delphi approach to develop a set of global outcome measures for patients with OI. The International Classification of Functioning, Disability and Health (ICF), was used to define domains and organize the outcomes from the literature search. After reviewing the outcomes extracted from the literature, trials and registries, the working group agreed on a final selection of domains and their definition (ICF definition as well as a lay description). These domains were then presented to the focus groups who prioritized the outcome domains by taking into account the items important to the OI community. All content was collected and analyzed and final domains were determined. A consensus of appropriate measuring instruments for each domain was reached with Delphi rounds. The entire approach was in line with the International Consortium for Health Outcomes Measurement ICHOM methodology.ResultsMore than 400 different outcome measures were identified in our literature search. After three Delphi rounds, 24 domains were selected. After the focus group sessions, the number of domains were reduced to 15. A consensus was reached on the measuring instruments to cover these domains for both children and adults.ConclusionThe Key4OI project resulted in standard set of outcome measures focused on the needs and wishes of individuals with OI and their families. This outcome set will enable healthcare teams and systems to compare and to improve their care pathways and quality of care worldwide. Further studies are needed to evaluate the implementation of this standardized outcome set

Sleep-active cells in the cerebral cortex and their role in slow-wave activity

We recently identified neurons in the cerebral cortex that become activated during sleep episodes with high slow-wave activity (SWA). The distinctive properties of these neurons are the ability to produce nitric oxide and their long-range projections within the cortex. In this review, we discuss how these characteristics of sleep-active cells could be relevant to SWA production in the cortex. We also discuss possible models of the role of nNOS cells in SWA production

Upwelling response to atmospheric coastal jets off central Chile : a modeling study of the October 2000 event

The spatial and temporal variability of nearshore winds in eastern boundary current systems affect the oceanic heat balance that drives sea surface temperature changes. In this study, regional atmospheric and oceanic simulations are used to document such processes during an atmospheric coastal jet event off central Chile. The event is well reproduced by the atmospheric model and is associated with the migration of an anomalous anticyclone in the southeastern Pacific region during October 2000. A robust feature of the simulation is a sharp coastal wind dropoff, which is insensitive to model resolution. As expected, the simulated oceanic response is a significant sea surface cooling. A surface heat budget analysis shows that vertical mixing is a major contributor to the cooling tendency both in the jet core area and in the nearshore zone where the magnitude of this term is comparable to the magnitude of vertical advection. Sensitivity experiments show that the oceanic response in the coastal area is sensitive to wind dropoff representation. This is because total upwelling, i.e., the sum of coastal upwelling and Ekman pumping, depends on the scale of wind dropoff. Because the latter is much larger than the upwelling scale, coastal wind dropoff has only a weak positive effect on vertical velocities driven by Ekman pumping but has a strong negative effect on coastal upwelling. Interestingly though, the weakening of coastal winds in the dropoff zone has a larger effect on vertical mixing than on vertical advection, with both effects contributing to a reduction of cooling