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Editorial: Equality, diversity and inclusive research for diverse rare disease communities
Rare diseases affect< 5 per 10,000 individuals, based on the European Union’s definition (European Union, 2000). The Department of Health and Social Care (DHSC, 2021) published the UK Rare Diseases Framework, highlighting the government’s dedication to enhancing the lives of the 3.5 million individuals affected by rare conditions in the UK (Rare Disease UK, 2000). A new framework has been established across the United Kingdom with four key priorities. These priorities include helping patients receive a final diagnosis quickly, increasing rare disease awareness among healthcare professionals, better coordination of care, and improving access to specialist care, treatments, and drugs (DHSC, 2021). The implementation must incorporate five supporting themes: patient voice, national and international collaboration, pioneering research, digital, data, technology, and broader policy alignment
Notes towards a pedagogy of be‐longing: Rewilding art and design education
© 2023 The Authors. International Journal of Art & Design Education published by National Society for Education in Art and Design and John Wiley & Sons Ltd.This article reflects on 4 years of research activities in the fields of horticulture and creative praxis. The initial project was a personal one and set out with a simple methodology of collecting, observing, and recording a specific genus of plants, that of Mentha. But as the specific question of whether a garden can, or should, be thought of as a work of art was raised it developed into an interactive, more‐than‐human dynamic between the researcher and multiple species. Ultimately, this led to a consideration of the positionality and interactions of the creative practitioner as critical, in order to develop a transdisciplinary praxis that explores the ecological and transformative potential of learning and healing through gardening. Through a reflexive narrative approach, the role of gardening in education, therefore, is positioned as an art and design praxis and as a partial remedy for several salient, contemporary global issues and challenges. A praxis that if not the complete remedy might at least help, in part, to remedy the damaging ecological experiences of adult and child learners alike, and as such, this article concludes with a provocation for teachers as artists and activists.This article reflects on 4 years of research activities in the fields of horticulture and creative praxis. The initial project was a personal one and set out with a simple methodology of collecting, observing, and recording a specific genus of plants, that of Mentha. But as the specific question of whether a garden can, or should, be thought of as a work of art was raised it developed into an interactive, more-than-human dynamic between the researcher and multiple species. Ultimately, this led to a consideration of the positionality and interactions of the creative practitioner as critical, in order to develop a transdisciplinary praxis that explores the ecological and transformative potential of learning and healing through gardening. Through a reflexive narrative approach, the role of gardening in education, therefore, is positioned as an art and design praxis and as a partial remedy for several salient, contemporary global issues and challenges. A praxis that if not the complete remedy might at least help, in part, to remedy the damaging ecological experiences of adult and child learners alike, and as such, this article concludes with a provocation for teachers as artists and activists
Predicting adolescents’ intentions to support victims of bullying from expected reactions of friends versus peers
Given the crucial role of bystanders in combating bullying in schools, there is a need to understand the reasons why children may or may not intervene on behalf of a victimised peer. The aim of the present study was to explore the association between children’s expectations of general peer reactions versus the reactions of their friends on three subtypes of victim support: consoling the victim, addressing the bully, and getting adult help. A sample of 630 students (297 girls; 333 boys, Mage = 12.5) from three public secondary schools in Germany completed a 30-item questionnaire measuring expected peer reactions, expected friend reactions, past victim support experiences, and intentions to support victims. Results revealed the more influential role of expected reactions of friends over general peers in predicting victim support with expected negative consequences from friends reducing children’s willingness to engage in victim helping, irrespective of the three sub-types of support studied. Expected negative outcomes from peers were also found to significantly affect students’ intentions to approach a teacher for help. Boys were found to be more concerned about their friends’ and peers’ reactions to victim support than girls. The findings are discussed in relation to bystanders’ willingness to offer victim support and associated practical implications for addressing the widespread problem of bullying in schools
The effect of maternal and early-life nutrition on redox homeostasis
This book chapter is not available on ChesterRepReactive oxygen species (ROS) serve as signaling molecules in the regulation of biological and physiological processes. Fluctuations in ROS levels play a crucial role in cellular function, proliferation, differentiation, and apoptosis during embryonic development. There is a strong association between early-life suboptimal growth and enhanced risk of development of chronic disorders in later life. This chapter aims to discuss the effects of maternal nutrition on redox homeostasis of the offspring at different stages of their life as a potential underlying mechanism in mediating the effects of early-life nutrition on the development of diseases in later life
Adapting the Structured Operational Research Training Initiative (SORT IT) for high-income countries
This item is not available on ChesterRep.SORT IT (Structured Operational Research Training InitiaTive) is a successful capacity building programme started 10 years ago to develop operational research skills in low- and middle-income countries. Public Health England (PHE) aims to embed a culture of research in front-line staff, and SORT IT has been adapted to train frontline health protection professionals at PHE North West (PHE NW) to collate, analyse and interpret routinely collected data for evidence-informed decision-making. Six participants from the PHE NW Health Protection team were selected to attend a two-module course in Liverpool, UK, in May and in November 2018. Five participants finished the course with completed papers on characteristics and burden of influenza-like illness in elderly care homes (two papers), use of dried blood spots for blood-borne virus screening in prisons, uptake of meningococcal ACWY (groups A, C, W-135 and Y) vaccine in schoolchildren and fires in waste management sites. The SORT IT course led to 1) new evidence being produced to inform health protection practice, and 2) agreement within PHE NW to continue SORT IT with two courses per year, and 3) showed how a research capacity building initiative for low- and middle-income countries that combines ‘learning with doing’ can be adapted and used in a high-income country
Paul’s Subversive Leadership: Gift-Giving, Patron-Client Relationships, and Leadership in the Pauline Correspondence
This thesis presents the argument that Paul deliberately subverts normal practices associated with gift-giving and with patron-client relationships, which he expects to be adopted by the communities to whom he is writing. As such, contrary to other studies, I argue that there is no tension between Paul’s egalitarian vision, and with the hierarchical language that he employs elsewhere. Whilst there is equality between members of the church, leadership and authority are necessary functions to help create healthy churches, and mature and Christ-like individual members.
I bring together two distinct areas in this study. Primarily, this thesis is concerned with the social world in which the Pauline congregations lived, specifically customs related to gift-giving and the various relationships through which gifts were exchanged. The second chapter situates my argument within the wider body of literature offering both an analysis of contemporary scholarship, and Paul’s historical context. Although the vertical dimension has been given significant attention, the horizontal dimension is less explored.
The third chapter outlines the various ways in which Paul subverts the normal patterns of gift and reciprocity. I demonstrate this by considering the three gift lists – Romans 12:6-8 and 1 Corinthians 12:7-10, 27-28 – showing that Paul offers the congregations a different way of sharing gifts with each other.
Chapters four and five address the apparent tension that exists between that subversive, egalitarian approach, with the hierarchical approach expressed elsewhere. Although Paul appears to remove status differences, and flattens hierarchy, he maintains a position of authority for himself (and others) at other times. Chapter four addresses the wider issues of power, authority, and leadership, arguing that Paul presents himself as a patron of the congregation, as well as shifting the focus away from the structures to the nature and character of leaders. Chapter five surveys several letters where issues of authority and leadership arise and I demonstrate that there too, Paul offers several subversive moves that transform the way his patronal position functioned. He is in no doubt, however, that such authority is necessary so that the Gospel is protected and so that the
congregations continue to function as they should.
The conclusion summarises the main findings ultimately showing that the concepts of equality and hierarchy, for Paul, work in harmony for the benefit of all. I also offer suggestions for further study, as well as offering thoughts on how some of the issues raised might inform conversations about church leadership today
Puddle Jumping: How do young children manage their grief following the death of their sibling and how do mothers use continuing bonds to maintain their children's relationship in the living world?
This thesis examines the narratives of four mothers who are bereaved of one of their children and are parenting living children. The study used an Interpretative Phenomenological Analysis to explore the lived experiences of bereaved siblings through
the stories told by their mothers. Previous research exploring the impact on children following the death of a sibling, indicates the potential long-lasting impact on their emotional wellbeing, but there is a scarcity of research which focuses on the younger child and the practice of continuing bonds by their mother. A review of the literature focuses on the traditions, rituals and practices enacted by mothers as they endeavour to create or to maintain relationships between all their children; those who have died and those in the living world.
A case study approach has been adopted across four case studies and includes semistructured interviews with each child’s mother using Interpretative Phenomenological Analysis (IPA) to demonstrate their lived experiences. Rich narratives allow an insight into how young siblings can manage their grief and maintain a relationship with their sibling. Analysis of the data revealed the importance of this sibling relationship and the ways in which the children’s mothers incorporated the memories of their dead children into their lives of their living children. The data revealed that grief is felt even when a sibling was not
known in the living world and that living siblings share stories and memories and are an important part of continuing bonds. Mothers spoke with love, hope, and confidence about all their children and of their determination to ensure their siblings remained in each other's lives. The thesis also demonstrates the tensions felt amongst educational professionals and western society in talking to young children about death and how their voice can become silenced, contributing to their grief.
Mothers play a key role in forging and maintaining the bond between their living and dead children, but further research in this area is needed
Molecular ecology of Long-finned pilot whales (Globicephala melas) in the eastern North Atlantic
The long-finned pilot whale (LFPW) (Globicephala melas) is a large matrilineal odontocete, has antitropical distribution, with a subspecies in each Hemisphere, G. melas melas in the North Atlantic, and G. melas edwardii throughout the Southern Hemisphere. It is the species most commonly encountered in mass stranding events (MSE) globally. The causes driving such events are often complex and multi-layered or even indeterminable. However, social cohesion or the disruption of the species’ renowned social bonds are thought to be a key factor, regardless of other external influences. This PhD thesis aimed to explore this by employing mtDNA and nuclear genetic markers to investigate kinship among samples collected from MSE and an “at-sea” pod group. Six MSE were analysed with a panel of microsatellite markers to determine the kinship dyads within each event. In all but one MSE calves were found with missing mothers, and in some events mother-offspring dyads were separated over different stranding phases, suggesting that disruption of these important relationships can cause/extend MSE. Additionally, samples from a grind (caught pod) were included in analysis to compare an “at-sea” pod assemblage to those involved in a MSE. Confirming that LFPW pods are composed of highly related small family groups, a pod unit, these pod units are found in association with other such units, a pod complex and this is conserved across both individuals “at-sea” and those within a MSE. This also indicates that MSE may not be driven by kin group disruption per se. Population structure across the eastern North Atlantic was also assessed using a combination of mtDNA, microsatellites, and RAD-Seq. Although, mtDNA reported significant differentiation between Scotland and Ireland, the nuclear data supported a lack of neutral and non-neutral genetic structure. This demonstrates the weakness of using only mtDNA to infer population structure within a species with matrilineal groups, while the high population connectivity is important in terms of spatial management strategies and supports the need for cross border collaboration. Finally, genome wide SNP analysis was used to compare the two subspecies, for the first time, revealing a high level of neutral divergence (FST = 0.215) and robust assignment to Hemisphere. Multiple marker-based neutrality tests also revealed a number of positive outliers between the Northern and Southern groups, compatible with adaptive divergence and/or genomic incompatibilities. The level of neutral and non-neutral divergence, alongside clear geographical separation, indicate that taxonomic reclassification may be required designating the separate Hemispheres as distinct species
Supply chain and digital transformation in the automotive industry
The aim of this thesis is to fill a gap in the literature by evaluating how digitalisation transforms the automotive industry in Germany, Croatia and Bosnia and Herzegovina as the countries move from Industry 3.0 to 4.0. To achieve the research aim, secondary and primary data were collected through multiple choice and open-ended survey questionnaires. The questionnaires were distributed to respondents in three automotive firms and suppliers (Thyssenkrupp Presta, AD Plastik and ASA Prevent). They were recruited using convenience and chain referral samplings. Out of 800 questionnaires, 142 participants responded. Multiple-choice responses were analysed using correlation, regression and cross-tabulation analyses. Open-ended texts were evaluated using thematic analysis. The thesis revealed the following findings: firms assist their suppliers in improving digitalisation (backward and upstream supply chain collaboration, including risk sharing and customer focus). Firms are in stage three out of four supply-chain automation stages. However, they are currently in stage four out of six digitalisation stages. Both collaboration and digitalisation levels affect product quality; firms tend to undertake a high level of R&D to enhance new product development through a downstream part of the supply chain collaboration. Collaboration is regarded vital for vertical and horizontal integration. Collaboration and customer focus are the most important aspects in implementing digitalisation; the advantage of electric vehicles is energy conservation by steering away from fuel and oil. Unfortunately, they also emit toxic battery waste, leading to environmental degradation. Moreover, the growth of the vehicle charging stations infrastructure has not kept pace with the growth of electric vehicles; digitalisation has transformed the labour market. It has abolished conventional labour. However, education and training are not consistently conducted at all levels in companies. The findings contain strategic implications for the industries to upskill the labour force to enhance digitalisation, supply-chain automation and AI skills facing Industry 4.0
Early Childhood Studies: A Student′ s Guide
This book chapter is not available on ChesterRepThis chapter will aim to introduce key issues related to Diversity, Equity and Inclusion by discussing the concepts with specific references to early childhood in national and international context. Diversity will be illustrated in a broader perspective relating to gender , race, culture, religion, ability/disability. References to the concept of intersectionality will highlight the importance of perceiving the child as a whole rather than looking from a single filter relating to one of the categories of diversity listed above. The importance and relevance of the Anti-Bias approaches such as anti racist, anti sexist, anti ableist, anti homophobic in the current context of early childhood will be discussed. The perspectives presented in this chapter will be illustrated with examples, case studies and reflection points to aid understanding. There will be links made to policies, challenges and debates around the issues related to Diversity, equity and inclusion in the contemporary and evolving contexts of early childhood