Role of Advocacy Organizations in Promoting Inclusive Education Policies for Students with Rare Chronic Health Conditions: Insights for Education Leaders

This qualitative study investigated how advocacy groups for rare chronic health conditions understood their relation to, and interaction with, educational leadership and policy. This study adopted a critical research orientation and framed inclusion as an equity and social justice issue. Semi structured interviews were conducted with advocates representing various rare chronic health conditions, and a policy review of Ontario’s inclusion policy, as well as relevant health policies were conducted. The analysis revealed that there was tension in participants’ understanding of inclusion, and participants did not always support full inclusion for students with rare chronic health conditions. There is a lack of knowledge and understanding on the part of the education system about rare chronic health conditions, and a lack of connection between the medical and educational systems. A lack of policy to address the needs of children with rare chronic health conditions was identified, as well as diversity in policy enactment between school boards and schools. Recommendations were made, including further examining current inclusion policy in Ontario and elsewhere for potential policy gaps for including students with rare chronic health conditions, better leveraging advocacy organizations to act as knowledge brokers for education systems, creating better connections between education systems advocacy organizations, and re-examining both the allocation and the role of educational assistants in promoting inclusive classrooms for students with rare chronic health conditions. Future research directions are suggested, including further examination of inclusive schooling, evaluating the ways in which barriers exist for inclusion of students with rare chronic health conditions, and further understanding parent, educator and educational leader perspectives on inclusion for students with rare chronic health conditions

Examining problem-solving interpretations: The role of age, sex, and femininity

The current study examined age and sex differences in communal interpretations (statements focusing on the needs of others), and whether participants\u27 femininity mediated these differences. One hundred and ninety six participants, 121 younger adults (M=19.26, SD=131: 53 M, 68 F) and 75 older adults (M=73.74, SD=7.65: 36 M, 39 F), were given a vignette regarding a hypothetical job relocation problem that involved either a male or female protagonist. To assess interpretations, participants were asked to indicate all the issues to be considered. The degree to which interpretations reflected communal concerns was coded. Results showed that women had higher communal interpretation scores and higher femininity means than did men in the study. Femininity was not demonstrated as a mediator of age and sex differences in communal interpretations. Implications for understanding how interpretations may affect the problem-solving process and implications for future research are discussed

Age and sex differences in everyday problem-solving goals and strategies for work and caregiving vignettes

The current study examined how age and sex of participants, gender stereotype roles for the protagonist, and domain of the problem influenced the generation of problem-solving goals and strategies. One hundred and seventeen participants, 136 younger adults (M= 19 .22, SD = 1.30:58 M, 78 F) and 81 older adults (M= 73.17, SD = 7.76:38 M, 43 F) were given two hypothetical vignettes, one in the work domain, and one in the caregiving domain. Responses were coded for other-focused goals and interpersonally-oriented strategies. A 2 (age) x 2 (sex) x 2 (form type) x 2 (domain) MANOVA indicated two significant three-way interactions for interpersonally-oriented strategies: domain by strategy by sex and strategy by age by sex. Results indicated that the reporting of discussion strategies varied by domain, Wilks\u27 Lambda = .806, F(1,212) = 51.10, p\u3c.001, and for the work domain, men were more likely to report seeking support strategies than women, F(1,212) = 9.21, p\u3c.003,eta2 = .04. When collapsed across domain, the only significant result indicated that older men were more likely to report discussion strategies than younger men, t(92) = -3.59, p\u3c.001. Finally, only domain differences emerged for other focused goals, Wilks\u27 Lambda = .941, F(1,202) = 12.75, p\u3c.001.Results indicate some age and sex differences in strategies, primarily by domain, however other-focused goals did not serve as a mediator of these differences. Implications for understanding the problem solving research methodology (i.e., self-generated problems vs. fixed problems) are discussed

THE EDUCATIONAL IMPACTS OF TUBEROUS SCLEROSIS COMPLEX

Tuberous Sclerosis Complex (TSC) is a rare genetic disorder that causes tumours to grow throughout the body. This can have serious consequences for individuals affected throughout their lifetime. People with TSC are affected by this disorder in terms of their medical health, cognitive and behavioural functioning. There is currently no research in the literature addressing the educational profile, needs, or cognitive profile from an educational framework of children with TSC. As children with TSC move through the education system, a number of issues can potentially affect their educational success. This qualitative research study examined the educational impacts of TSC on children currently in the education system. The aim of the study was to gain an understanding of practices that are facilitating success in these children’s educational experience and specific deficits commonly experienced. In depth, semi-structured interviews were carried out with 10 parents of children with TSC (in Grades 1 thru 8), and 6 of their teachers/educational assistants (EAs). Academic, social and medical findings and their implications are discussed

Merkel cell polyomavirus large T antigen disrupts lysosome clustering by translocating human Vam6p from the cytoplasm to the nucleus

Merkel cell polyomavirus (MCV) has been recently described as the cause for most human Merkel cell carcinomas. MCV is similar to simian virus 40 (SV40) and encodes a nuclear large T (LT) oncoprotein that is usually mutated to eliminate viral replication among tumor-derived MCV. We identified the hVam6p cytoplasmic protein involved in lysosomal processing as a novel interactor with MCV LT but not SV40 LT. hVam6p binds through its clathrin heavy chain homology domain to a unique region of MCV LT adjacent to the retinoblastoma binding site. MCV LT translocates hVam6p to the nucleus, sequestering it from involvement in lysosomal trafficking. A naturally occurring, tumor-derived mutant LT (MCV350) lacking a nuclear localization signal binds hVam6p but fails to inhibit hVam6p-induced lysosomal clustering. MCV has evolved a novel mechanism to target hVam6p that may contribute to viral uncoating or egress through lysosomal processing during virus replication

Fashion archive fervour: the critical role of fashion archives in preserving, curating, and narrating fashion

Fashion items and artefacts across the 19th and 20th centuries were once considered unworthy of placement in museums and archives on account of their perishable nature and their association with the shallow pleasures of low culture. The perceived fragile and ephemeral nature of fashion garments and accessories has been reevaluated with material objects now considered worth saving for multiple purposes and uses. Awareness of the high social, cultural, economic, and historic value of physical fashion relics has resulted in the trend for fashion designers, brands, and museums to collate, create, and manage fashion archives. The article analyses the importance for both industry and consumer of preserving and accessing fashion archives in the 21st century in both digital and traditional ways. It highlights the benefits of collating a holistic multi-modal archive by combining material and textual cultural objects in various forms to portray and contextualize the lived social experience. A case study will analyse a selected educational fashion archive based in postcolonial Hong Kong. The contemporary fashion archive’s role is evaluated from the perspective of archivist and user regarding contested issues such as commercialization, curatorial objectivity, or controlled access, while evaluating future directions for the fashion archive as ultimate style repository

The research landscape of tuberous sclerosis complex–associated neuropsychiatric disorders (TAND)—a comprehensive scoping review

Background Tuberous sclerosis complex (TSC)–associated neuropsychiatric disorders (TAND) is an umbrella term for the behavioural, psychiatric, intellectual, academic, neuropsychological and psychosocial manifestations of TSC. Although TAND affects 90% of individuals with TSC during their lifetime, these manifestations are relatively under-assessed, under-treated and under-researched. We performed a comprehensive scoping review of all TAND research to date (a) to describe the existing TAND research landscape and (b) to identify knowledge gaps to guide future TAND research. Methods The study was conducted in accordance with stages outlined within the Arksey and O’Malley scoping review framework. Ten research questions relating to study characteristics, research design and research content of TAND levels and clusters were examined. Results Of the 2841 returned searches, 230 articles published between 1987 and 2020 were included (animal studies = 30, case studies = 47, cohort studies = 153), with more than half published since the term TAND was coined in 2012 (118/230; 51%). Cohort studies largely involved children and/or adolescents (63%) as opposed to older adults (16%). Studies were represented across 341 individual research sites from 45 countries, the majority from the USA (89/341; 26%) and the UK (50/341; 15%). Only 48 research sites (14%) were within low–middle income countries (LMICs). Animal studies and case studies were of relatively high/high quality, but cohort studies showed significant variability. Of the 153 cohort studies, only 16 (10%) included interventions. None of these were non-pharmacological, and only 13 employed remote methodologies (e.g. telephone interviews, online surveys). Of all TAND clusters, the autism spectrum disorder–like cluster was the most widely researched (138/230; 60%) and the scholastic cluster the least (53/200; 27%). Conclusions Despite the recent increase in TAND research, studies that represent participants across the lifespan, LMIC research sites and non-pharmacological interventions were identified as future priorities. The quality of cohort studies requires improvement, to which the use of standardised direct behavioural assessments may contribute. In human studies, the academic level in particular warrants further investigation. Remote technologies could help to address many of the TAND knowledge gaps identified