30921 research outputs found
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Caregivers of children with rare diseases: experiences and needs in a Canadian population
Rare diseases (RDs) affect 2.5 million Canadians, often starting in childhood. Due to medical complexities and limited disease knowledge, many children with RDs are known to face a lengthy diagnostic odyssey. Previous research highlights the need for social connection to other RD families, informational resources, and psychosocial support among parents and caregivers of children with RDs. Our study aims to fill a knowledge gap by examining Canadian RD caregivers’ experiences, preferences, and informational and support-seeking behaviours of Canadian RD caregivers, and how these outcomes and are correlated with various demographic factors.
We analyzed a total of 95 eligible survey responses from eligible Canadian caregivers. Over half of caregivers received a diagnosis for their child within the first year of medical investigations, and a similar proportion believed the diagnosis could have been made earlier. Overall, caregivers had positive perceptions of their interactions with their child’s genetics healthcare provider (gHCPs). These perceptions were significantly associated with caregiver income, education, and type of condition that was diagnosed. Caregivers primarily relied on internet webpages, support groups, and personal networks for informational and emotional support. However, these preferences varied based on a variety of demographic factors. Notably, caregivers’ perceived level of emotional support did not improve after obtaining a diagnosis for their child, and a minority of caregivers were offered counselling, emotional support, or recommendations of support groups/RD organizations.
This study quantitatively examines Canadian RD caregivers’ experiences, including their diagnostic journey, interactions with gHCPs, and their informational and support seeking behaviours. Our findings suggest that caregivers require additional psychosocial support particularly at the time of their child’s diagnosis and in the period following obtaining their diagnosis. The varied use of informational and emotional supports based on demographic factors and factors related to the diagnosis itself underscores the need for patient-centred care by healthcare providers. Overall, the findings of this study contribute to the current understanding of RD caregiver experiences in Canada and shed insight on opportunities for improving care for members of the RD community.October 202
Strain classification of genomic data using variation graphs and gene ranking
Genomics is the study of an organism’s genetic information; of how organism traits and characteristics are developed and inherited. A common problem in genomic analysis is identifying new strains of pathogens and classifying them. In scenarios involving pathogenic bacteria, for example, this can help with outbreak analysis, prediction, and prevention. There are existing high resolution classifiers that perform at the species level, but for organisms with high rates of gene transfer, classification at the sub-species (strain) level can still prove challenging. In this work, we implement a bioinformatics pipeline that tests the use of several metrics (one novel) for identifying specific loci of the foodborne disease pathogen Campylobacter jejuni that may be associated with particular strains. The pipeline itself is highly adaptable to user-provided bacterial genome data, and shows how certain tools can be used with our metric approach to classify novel strains into cluster groups from the user-provided metadata.February 202
Human rights and reproductive healthcare in rural, remote, and northern Manitoba
This study aims to analyze if there are human rights violations regarding reproductive healthcare in rural, remote, and northern Manitoba, focusing on STBBIs, contraception, maternity care, and abortion. No similar research applies international human rights treaties to reproductive healthcare in rural Manitoba. There is minimal research on reproductive healthcare in the region. Chapter one focuses on Canada’s human rights obligations based on international human rights treaties. Chapter two maps out what reproductive healthcare is available in the region. Chapter three analyses how reproductive healthcare in Manitoba meets and does not meet Canada’s international human rights obligations. Chapter four makes recommendations. The respect, protect, fulfil framework, is used to analyze if there are human rights violations occurring in Manitoba in relation to reproductive healthcare. The research includes a scoping review. An analysis if the reproductive care provided in rural, remote, and northern Manitoba amounts to a human rights violation is complex. Rural, remote, and northern Manitoba is vast geographically. The research found limited or no violations in obligations related to STBBIs and contraceptives. Concerningly, there were many violations in relation to obligations surrounding care for pregnancy, including abortion and maternity care, specifically around prenatal care and the birth evacuation policy.October 202
Exploring the lived experiences of Indigenous grandmothers raising grandchildren in the Kinship Care Program of the child welfare system: digital storytelling rooted in an Indigenous research paradigm
A growing number of Indigenous grandmothers care for their grandchildren in the Indigenous Child and Family Services (CFS) Authorities in Manitoba, Canada. These grandmothers often face complex issues in addition to being economically and socially disadvantaged. This study explored the lived experiences of grandmothers raising their grandchildren within the Kinship Care Program of the Indigenous CFS Authorities. The objectives of the study were: (1) to understand the lived experiences of Indigenous grandmothers raising their grandchildren, (2) to uncover if, how, and to what extent CFS contributes to grandmothers’ health and well-being, and (3) to explore grandmothers’ perspectives on how they might want to be involved in CFS policy and practice changes and in CFS governance. The Two-Eyed Seeing conceptual model embedded in an Indigenous research paradigm, and storytelling as methodology, combined with digital storytelling as method, facilitated the authentic engagement of grandmothers. Recruitment of knowledge holders/Indigenous grandmothers was challenging, with two Indigenous grandmothers participating in the study. Both knowledge holders created a digital story and shared their digital story in a follow up semi-structured interview and in a talking circle, contributing over 80 hours to the study. Two Indigenous key informants volunteered to participate in an individual one-hour semi-structured interview, viewed the digital stories, and participated in the talking circle with 5 to 6 hours of engagement each. The prioritization of Indigenous grandmothers’ situated knowledge and the meaning-making process gave way to surprising and disturbing findings. It became apparent that there was a collective and powerful story in the unspoken stories; the omnipotent fear of the child welfare system, reliving the past and present traumas of colonization, and fear of exploitation and harm was at the forefront, as well as the ongoing disempowerment of Indigenous grandmothers. Notwithstanding, Indigenous grandmothers/participants demonstrated resiliency, empowerment, and hope as they reclaimed Indigenous womanhood. This study highlights the urgent need for the involvement of Indigenous grandmothers at the helm of CFS governance, policy, and practice changes.May 202
Time spent above optimal cerebral perfusion pressure is not associated with failure to improve in outcome in traumatic brain injury
Background
Optimal cerebral perfusion pressure (CPPopt) has emerged as a promising personalized medicine approach to the management of moderate-to-severe traumatic brain injury (TBI). Though literature demonstrating its association with poor outcomes exists, there is yet to be work done on its association with outcome transition due to a lack of serial outcome data analysis. In this study we investigate the association between various metrics of CPPopt and failure to improve in outcome over time.
Methods
CPPopt was derived using three different cerebrovascular reactivity indices; the pressure reactivity index (PRx), the pulse amplitude index (PAx), and the RAC index. For each index, % times spent with cerebral perfusion pressure (CPP) above and below its CPPopt and upper and lower limits of reactivity were calculated. Patients were dichotomized based on improvement in Glasgow Outcome Scale-Extended (GOSE) scores into Improved vs. Not Improved between 1 and 3 months, 3 and 6 months, and 1- and 6-month post-TBI. Logistic regression analyses were then conducted, adjusting for the International Mission for Prognosis and Analysis of Clinical Trials (IMPACT) variables.
Results
This study included a total of 103 patients from the Winnipeg Acute TBI Database. Through Mann–Whitney U testing and logistic regression analysis, it was found that % time spent with CPP below CPPopt was associated with failure to improve in outcome, while % time spent with CPP above CPPopt was generally associated with improvement in outcome.
Conclusions
Our study supports the existing narrative that time spent with CPP below CPPopt results in poorer outcomes. However, it also suggests that time spent above CPPopt may not be associated with worse outcomes and is possibly even associated with improvement in outcome
Exploring resilience among queer youth in gender sexuality alliances
Gender Sexuality Alliances (GSAs) are an important vehicle for engaging queer youth in Canadian high schools. GSAs present a useful entry point for queer pedagogy and can counter heteronormative discourse in schools. The literature shows that GSAs are an important tool for building resilience in queer youth. However, few studies have been undertaken that examine the work and impact of GSAs from the perspective of both queer theory and resilience theory. Drawing on queer theory and resilience theory, this case study examines the experiences of three Manitoba high school students in order to examine how queer theory and resilience theory speak to each other in the context of GSAs in Manitoba secondary schools. This research project addresses the following main research questions: 1) How do student experiences of GSAs align with both queer theory and resilience theory? 2) How do students who participate in GSAs perceive their resilience? Interviews showed that participants experienced their GSAs as spaces where they could safely socialize and explore their identity, but did not engage in broader educative or advocacy activities. These findings point to implications and recommendations for GSA advisors and school administrators in order to help GSAs better serve queer youth in secondary schools.February 202
Discovery of quantitative trait loci associated with erucic acid content in Brassica napus L. seed
Brassica napus L. is a crucial oilseed crop and holds significant economic value for Canada. There are several seed quality types of B. napus, including canola with low erucic acid (used for edible purposes), as well as genotypes with high erucic acid, mainly used for industrial applications. This research was directed at increasing erucic acid levels in high erucic acid rapeseed (HEAR). The goal was to identify and characterize minor-effect quantitative trait loci (QTL) related to erucic acid content in two distinct doubled haploid (DH) populations, CBLD2 and CBER2. Both populations utilized two HEAR parents to fix the known FAE1 genes and focus on identifying minor QTL impacting erucic acid content. The populations were phenotype in two locations over two years. Erucic acid content was evaluated using gas chromatography and the DH populations were genotyped using genotyping-by-sequencing (GBS). QTL were detected on various chromosomes, illustrating the polygenic regulation of erucic acid. Specifically, significant QTL were discovered on chromosomes A04, A07, and C08 in CBLD2, explaining up to 27 %, 21 %, and 22 % of phenotypic variation, respectively. In the CBER2 population, stable QTL on chromosomes A01, A02, and A05 accounted for 7-9 %, 7-9 %, and 11-18 % of variation, respectively. Analysis also revealed a positive correlation between erucic acid and oil content, and no significant correlation between erucic acid and other agronomic traits. This suggests erucic acid content is regulated independently from other agronomic characteristics. These insights into the genetic foundation of erucic acid content in B. napus are crucial for marker-assisted breeding, aiming to enhance erucic acid levels for improved agricultural and industrial uses.October 202
Musicking for social change: music educators' perceptions of social justice education
Social justice education (SJE) is broadly understood as the pedagogical work of challenging the systems, structures, and discourses that oppress, exploit, and exclude. Importantly, SJE vis-à-vis music education offers students unique opportunities to critically connect with and respond to the world by engaging musically with issues of (in)equity and (in)justice. However, despite its transformative potential, there is limited research on how the concept of SJE is perceived by secondary music educators. This matters because music educators’ perceptions of SJE inevitably shape their orientations toward and relationships with students, pedagogy, music, and social justice. Therefore, grounded in a bricolage approach to methodology that draws on critical, poststructural, and anti-colonial perspectives, this qualitative research study employs semi-structured interviews to critically examine how 10 Grade 7 to 12 Manitoba school music educators: (a) conceptualize SJE, (b) understand the importance of SJE in relation to their roles as music educators, and (c) understand the connections between social justice, music education, and the Manitoba music curriculum framework. This study reveals that research participants’ perceptions of SJE are both constructed within and constrained by the dominant discourses of the Western classical ensemble paradigm, thereby perpetuating the hegemony of Western art music and colonial musical epistemologies while simultaneously marginalizing the work of social justice. Findings also reveal that study participants’ perceptions of SJE are largely informed by liberal conceptions of social justice which have the potential to invisibilize unequal power relations and normalize coloniality. This study is significant in coming to know how, despite music educators’ best intentions, efforts to enact social change through music education may inadvertently embody oppressive potential.October 202
Assessing the Biomechanical Impact of Dentition Types and Craniofacial Forms on Intact and Fractured Mandibles
Currency, Oral and maxillofacial surgeon globally dealing with some challenges in Management of Mandibular fracture. It is imperative for clinician to have in depth understanding of biomechanic of the intact and fractured mandible to be able to improve the quality care and prevent further complications associated with the effectiveness of the open reduction and internal fixation of mandibular fracture. It is also important for clinician to have a thorough understanding of bone biology and the healing process, and how it is directly affected by mechanical and biological factors
Optimization of orocessing parameters for 3D printed product using Taguchi method and desirability function analysis
Additive Manufacturing (AM) or 3D printing technologies use fused layers of the material to build the cross-sectional geometry of the product. As variable processing parameters have an impact on product quality, it is crucial to ascertain the relationships of AM process parameters, productivity, sustainability, and structure performance. This research investigates the effect of the fused deposition modeling (FDM) process parameters on the response variables, including mechanical attributes, energy consumption, material consumption, and manufacturing time of the 3D printed product. Experiments are conducted for the FDM variable parameters of the infill pattern, infill density, layer height, printing speed, printing temperature, and wall thickness. Design of the experiment approach is used to determine the best combination of the chosen parameters. A L18 orthogonal design method is employed to collect the testing data. Taguchi and analysis of variance methods are applied in the data analysis of variable FDM parameter settings. The research finds different effects on the response variables. The optimization of response characteristics is performed using the multi-objective optimization desirability technique. The best combinations of process parameters are obtained for the chosen response variables.Mitacs , North ForgeMay 202