Introduction: Children and youth with disabilities and special healthcare needs, and their families, have been uniquely affected by the COVID-19 pandemic. However, the voices of children themselves are still not well represented in the existing literature. Methods: This qualitative descriptive study used a combination of visual methods and interviews to learn about the experiences of Canadian children with disabilities (n=18) and their parents (n=14) during the COVID pandemic and into the post-pandemic period. Data collection was carried out between January and July 2023. The aim was to identify the supports and services children and families need at present and moving forward. Results: Families' pandemic experiences were complex and nuanced. For many, the pandemic complicated and disrupted everyday activities and supports. These disruptions were largely buffered by parents. However, some families also identified unexpected benefits. Key themes pertaining to present and future needs included the need for services that are flexible; consistent; conducive to relationship-building; comprehensive; coordinated across sectors; and designed to support the needs of the whole family. Discussion: Implications for policy and practice are outlined.
COVID-19 , Disabled Children , Parents , Qualitative Research , Humans , COVID-19/epidemiology , Child , Parents/psychology , Canada/epidemiology , Female , Male , Adolescent , Health Services Needs and Demand , SARS-CoV-2 , Adult , Child, Preschool , Social Support , Pandemics
PURPOSE: This study explored the feasibility, impact and parent experiences of ENVISAGE (ENabling VISions And Growing Expectations)-Families, a parent-researcher co-designed and co-led program for parents/caregivers raising children with early-onset neurodisabilities. METHODS: Parents/caregivers of a child with a neurodisability aged ≤6 years, recruited in Australia and Canada, participated in five weekly online workshops with other parents. Self-report measures were collected at baseline, immediately after, and 3 months post-ENVISAGE-Families; interviews were done following program completion. Quantitative data were analyzed with generalized estimating equations and qualitative data using interpretive description methodology. RESULTS: Sixty-five parents (86% mothers) were recruited and 60 (92%) completed the program. Strong evidence was found of effects on family empowerment and parent confidence (all p ≤ 0.05 after the program and maintained at 3-month follow-up). The ENVISAGE-Families program was relevant to parents' needs for: information, connection, support, wellbeing, and preparing for the future. Participants experienced opportunities to reflect on and/or validate their perspectives of disability and development, and how these perspectives related to themselves, their children and family, and their service providers. CONCLUSIONS: ENVISAGE was feasible and acceptable for parent/caregivers. The program inspired parents to think, feel and do things differently with their child, family and the people who work with them.Implications for rehabilitationENVISAGE (ENabling VISions And Growing Expectations)-Families is a co-designed, validated parent/researcher "early intervention and orientation" program for caregivers raising a child with neurodevelopmental disabilities (NDDs).ENVISAGE-Families empowered parents' strengths-based approaches to their child, family, disability, and parenting.ENVISAGE-Families increased caregivers' confidence in parenting children with NDD's and provided them tools to support connection, collaboration, and wellbeing.Raising children with NDD can have a profound impact on caregivers, who can benefit from strengths-based, future focused supports early in their parenting experience.
Caregivers , Parents , Female , Child , Humans , Mothers , Parenting , Early Intervention, Educational
The work describes a novel approach to the design of a fast, multichannel measurement system for plasma diagnostics [A. Wojenski et al., Fusion Eng. Des. 123, 727 (2016)]. Its main scope is to provide measurements of soft X-ray (SXR) emission during plasma phenomena at the W-Environment in Steady-state Tokamak (WEST), especially for monitoring and tracing tungsten impurities. This paper describes the vertical Gas Electron Multiplier (GEM) camera installed at the WEST [M. Chernyshova et al., J. Instrument. 10, P10022 (2015)]. The designed GEM detector readout board has more than 100 channels, resulting in high-performance requirements for the data acquisition and processing system. The novel system construction approach is that the unit works on the raw signals providing a high quality of the data, especially in the scope of pileup effect analysis. In the case of doubtful results, the source data can be easily reviewed offline. The data selection and transmission are done in Field-Programmable Gate Arrays (FPGAs) on the custom boards with the custom Peripheral Component Interconnect (PCI)-Express Gen2 switch that allows us to register signals from multiple FPGAs and then process the data by complex algorithms [G. Kasprowicz et al., J. Fusion Energy 38, 480 (2019)]. The firmware is replaceable and different working modes can be applied (some under verification): global trigger mode, high-speed data serialization, and extended signal registration. Low level optimized central processing unit software for data readout was also designed [P. Linczuk et al., J. Instrum. 14, C05001 (2019)]. The installation of the system is described due to complex system components' distribution. The first results of the successful acquisition of the plasma at the WEST are discussed. The corresponding SXR energy and topology spectra were computed. Those are the first technical measurements of the system to ensure verification of data quality.
The measurement system based on gas electron multiplier detector is developed for soft X-ray diagnostics of tokamak plasmas. The multi-channel setup is designed for estimation of the energy and the position distribution of an X-ray source. The focal measuring issue is the charge cluster identification by its value and position estimation. The fast and accurate mode of the serial data acquisition is applied for the dynamic plasma diagnostics. The charge clusters are counted in the space determined by 2D position, charge value, and time intervals. Radiation source characteristics are presented by histograms for a selected range of position, time intervals, and cluster charge values corresponding to the energy spectra.
A Gaseous Electron Multiplier (GEM)-based detector is being developed for soft X-ray diagnostics on tokamaks. Its main goal is to facilitate transport studies of impurities like tungsten. Such studies are very relevant to ITER, where the excessive accumulation of impurities in the plasma core should be avoided. This contribution provides details of the preliminary tests at ASDEX Upgrade (AUG) with a focus on the most important aspects for detector operation in harsh radiation environment. It was shown that both spatially and spectrally resolved data could be collected, in a reasonable agreement with other AUG diagnostics. Contributions to the GEM signal include also hard X-rays, gammas, and neutrons. First simulations of the effect of high-energy photons have helped understanding these contributions.
The high resolution X-Ray crystal spectrometer at the JET tokamak has been upgraded with the main goal of measuring the tungsten impurity concentration. This is important for understanding impurity accumulation in the plasma after installation of the JET ITER-like wall (main chamber: Be, divertor: W). This contribution provides details of the upgraded spectrometer with a focus on the aspects important for spectral analysis and plasma parameter calculation. In particular, we describe the determination of the spectrometer sensitivity: important for impurity concentration determination.
