Kingston University

Caregivers with an autistic child often experience stigma, which can lead to detrimental mental health consequences. Affiliate stigma is the internalization of, and psychological responses to, stigma experienced due to an individual’s association with a person who is stigmatized. Social support has been shown to mediate the relationship between affiliate stigma and depression in caregivers of special needs children. However, research on social support as a moderator of this relationship in autistic children has not been completed. We examined the associations between affiliate stigma, social support, and depression as well as the moderating role of social support. Using online questionnaires, 110 caregivers of autistic children reported their child’s autistic traits, affiliate stigma, perceived social support and depressive symptoms. A moderated regression was run to determine if social support significantly impacted the association between affiliate stigma and depression. Affiliate stigma was positively associated with depressive symptoms and social support was negatively associated with depressive symptoms. The moderating effect of social support on the relationship between affiliate stigma and depressive symptoms was not significant. Upon separating the social support variable into family, significant other, and friend subgroups, no additional significant moderators were found. This is one of the first studies to investigate affiliate stigma in North America and demonstrates that affiliate stigma is not only experienced by parents of autistic children but is significantly associated with depression. Clinicians working with these parents might focus on overcoming affiliate stigma to potentially ameliorate their client’s depression.

Breast cancer (BC) constitutes a significant public health challenge in Italy, with a considerable impact on healthcare resources and societal costs. Despite advancements in diagnostics and therapies, the economic burden of BC remains substantial, necessitating a comprehensive evaluation to inform healthcare policy and resource allocation. The aim of this study is to estimate both direct health costs and social security costs related to BC. This study utilized real-world data from the Italian Health Information System (HIS) and Local Health Unit (LHU) Umbria 2 HIS databases spanning 2010–2019. Direct health costs, encompassing hospitalizations, outpatient visits, and drug prescriptions, were assessed alongside social security costs associated with BC-related work inability. Statistical analyses and probabilistic models were employed to estimate costs and evaluate trends over time. The analysis revealed an annual cost of €273 million for hospital admissions related to BC in Italy, with metastatic BC (MBC) incurring the highest average annual cost per patient (€5018). When outpatient visits and drug consumption were incorporated, the mean annual cost per patient in LHU Umbria 2 rose to €11,380 for MBC. Social security costs, predominantly comprising disability benefits (DBs), totaled €579 million annually. Overall, the study estimated the total annual economic impact of BC in Italy to exceed €1 billion, with social costs representing 50.4% of the total burden. This comprehensive assessment underscores the substantial economic strain imposed by BC in Italy and highlights the need for early detection and intervention strategies to mitigate costs and enhance patient outcomes. These findings offer valuable insights into the economic landscape of BC, guiding policy decisions and resource allocation efforts aimed at optimizing BC management and alleviating its societal burden.

The poem sometimes momentarily, sometimes for years, is part of a group of poems I have been working on, experimenting with a process of erasure and restructuring of my own texts (book chapters, essays and conference talks). In a moment when my creative writing practice was feeling uncomfortably fallow, Emma Filtness’ presentation of her erasure work Bandaged Dreams[i], at the Visceral Bodies symposium, April 2023, seemed to suggest a possible way back in. I began to experiment with erasure - though, somewhat unconventionally for erasure poetry, I am both the author of the ‘found’ text and the erasure. In putting my academic texts through this process, my aim was to give back to the themes of my research the fluidity, ambivalence and uncertainty rightfully theirs, before I tamed them into an academic structure. The original text remains valid, in its own form, but I could sense something else beneath the text, something related to why I write at all. I write because language terrifies me, because language is slippery, always too much and too little. And because, as poet Jennifer S. Cheng suggests, ‘Sometimes it is a broken narrative, a half-language, that brings us to tears.’[ii] I see this poetry project as a chance to lean into the fragmented, searching element of my writing practice, to which I am sometimes nervous to give free rein, for fear of becoming incomprehensible when what I want to talk about is already difficult to articulate. It is also a way to explore my relationship to ‘academic’ writing, as a first-generation academic. I draw on Jack Halberstam’s questioning of the kinds of knowledge and learning produced by ‘disciplinary correctness’[iii] and the potential for ‘alternative ways of knowing and being’[iv], particularly those explored through Halberstam’s conceptualisation of failure. More broadly, my poetic-prose and poetry writing practice aims to perform the often ambivalent and contradictory experience of early motherhood. This practice touches upon the embodied nature of care, the effects of motherhood on language, and writing as an act of survival. Alongside my creative life writing practice, my ongoing PhD research project looks at how, through theories of the spectral, intersectionality, queerness, feminism, disability, failure and anecdote, we might aspire to transform and re-possess language, in an attempt to express those experiences most difficult to put into words. Both my creative and critical practice specifically explore a recurring connection between my experience of motherhood and ideas of haunting, of presence and absence and repetition (daily and generational). [i] Filtness, E., 2022, Bandaged Dreams, London: Broken Sleep Books [ii] Cheng, J.S., 2022, Dear Blank Space, https://lithub.com/dear-blank-space-a-literary-narrative/ [iii] Halberstam, J., 2011, The Queer Art of Failure, Durham and London: Duke University Press, p. 6. [iv] Halberstam, J., 2011, The Queer Art of Failure, Durham and London: Duke University Press, p. 24.

The film Tainted Love (2023) consists of scenes shot in a gold refinery, juxtaposed with clips of a squirming maternal body, overlaid with definitions of love (from Lomas' lexicography - Provisional list; 2021). It offers a meditation on the value of love in a capitalist system obsessed with profit and commodification, calling into question the value assigned to different modes of production. The unquantifiable value of caring for loved ones is juxtaposed with the solidity of gold – a material with a long history of use in jewellery and talismans associated with love, betrothal and devotion. The text will explore links between the invisible labour of familial caring, love, nurturing and the concepts of emotional labour and cognitive labour with reference to Alva Gotby (2023) and the emerging concept of the ‘motherload’.

This article traces my artistic practice with bread dough. The writing intertwines descriptions of practice and theory, exposing the ambiguities of maternal experience through the dough. Beginning with research on suspended temporalities, the dough reveals multi-layered insights into physical and economic maternal experience. Materialities of bread dough work together with embodied practices which explore them: slow, spreading growth, stickiness, weight and awkwardness, kneading as rhythmic, repetitive labour, invisibility. The writing connects the research to the performance project BRED, a participatory installation depicting a fictional start-up company, in which the dough stars as the object of ‘work,’ here no longer invisible, a vehicle for the voice of the maternal within a performative corporate setting.

This multidisciplinary fusion of creative writing, drawings, family documents and analysis, explores my 1960s childhood experience of being a sentient canvas for my hairdresser-mother’s self-expression. The piece is part of a larger, ongoing research experiment on the terrain of trauma studies, for which I undertake ‘freefall escapades’ (harnessing iterative, truth-seeking, neurodivergent hypertextuality) into my embodied journey growing up female in the racialised, post-WW2 British family. This experiment aims to engage with the forces of social production at work and at play, in minds and in bodies, by locating autotheoretical subjectivity not just within a socio-historical context but within a structural Marxist historical materialist analysis. The imperatives behind my larger experiment are twofold. Firstly, to challenge politically engaged feminist, autoethnographic, family-narrative/photography, new materialist, and trauma theory – where the question of classis habitually reduced to an aspect of intersectional identity expressed through culture, language, materiality, and perceived privilege. Secondly, as a publicly and socially engaged writer, artist, activist and trade unionist, to use creativity to expand Marxist ideas on the family as an adaptive capitalist social institution beyond the critical disciplines of political economy and social history. My aim is to illuminate the class-based nature of changing social relationships in connection with industrial and technological development in the forces of production. For this specific essay, I offer interpretations of how my mother pulled, twisted, curled, lacquered, permed and pinned my baby-hair as an act of social alienation and performance on a political stage within the inflamed post-WW2 British economy. In doing so, I also navigate the ethical and political hazards of bringing together class-based Marxist analysis with subjective experience and family memory – in doing so, tending to the manifestation of alienation in those who are not conscious of being alienated, and the imperative to do no harm. All imagery is by me, unless specified otherwise.

Editorial by the guest editors (Anna Argirò, Anna Brook and Katja Čičigoj) introducing the Visceral Bodies Special Issue of Studies in the Maternal.

Background Children’s hospices have been central to providing care for children with complex and palliative care needs in the UK since the first children’s hospice opened in Oxford in 1982. Since then, children’s hospices have opened countrywide to meet the needs of the increasing number of children requiring such care (Fraser, et al. ‘Make every child count’: estimating current and future prevalence of children and young people with life-limiting conditions in the United Kingdom: final report. 2020). This increase is especially noted in the neonatal/under 1 year group. Shooting Star Children’s Hospices is local to Kingston University, providing care/services for over 700 children/families and consists of two in-house facilities (one at Hampton and one at Guildford) and a community service. Kingston University and Shooting Star Children’s Hospices have a long collaborative working relationship.The Hospice E-Learning Placement (HELP) Peer Enhanced e-Placement (PEEP) project would involve the collaborative design and delivery of a virtual hospice e-learning placement experience to children’s nursing students and learning disability students. Aim A 37.5 hour online/blended virtual placement experience for all children’s nursing students and learning disabilities. Year 2 students from Kingston University.Throughout the week students were taken through a pathway from diagnosis to referral to dying. The placement included one face-to-face day at Shooting Star Children’s Hospices, where a simulation around death and dying and communication was experienced. This approach could be adapted for other specialties but we envisage it could become mainstay within the new curriculum based on the NMC standards (Nursing & Midwifery Council. The code: professional standards of practice and behaviour for nurses, midwives and nursing associates.) to commence at Kingston University in September 2024. Method A one-week blended virtual children’s hospice practice placement using the PEEP model (Jackson, Roberts, Elliott. Evidence-based handbook to practice placements for allied health professionals. Health Education England). Survey of students. Results 25 students attended. Feedback outstanding. Learning objectives achieved. Runner-up for student Nursing Times award. Students were inspired and applied to work with Shooting Star Children’s Hospices. Conclusion Continued partnership working with Shooting Star Children’s Hospices and continue to provide PEEP placements.

This article re-examines Arendt’s notion of ‘natality’ through a reinterpretation of her public-private distinction as dynamic, and engaging specifically with feminist reflections on ‘the maternal’ as provided by Adriana Cavarero and Judith Butler. As the human capacity of beginning something new, Arendt’s concept of ‘natality’ implies that human beings come into the world not as self-generated, but as related to others. Nonetheless, this notion has been criticized for abstracting from the concrete experience and generative process of birth. More generally, it has often been argued that Arendt separates human beings’ first appearancein the world through birth from their capacity to appear in the shared scene of political life. Building on feminist reflections on maternity and suggesting an interpretation of Arendt’s public/private distinction as dynamic, this article shows that the private sphere exhibits its plurality and embodiment through intimate relations that inform the political space. This way, it argues that the interplay between what Arendt calls ‘first and second birth’ can be rethought as non-exclusive but connected, reconsidering the ‘first birth’ as a political and existentially significant event already staged within a network of relations.

Why are icons important? Part of the joy of icons is their simplicity and their ability to convey meaning with great economy of line. Not only this but well thought out, simple icons can provide a means of communication without words. This chapter will guide you through the process of developing your visual practice and creating a library of go-to icons for use in your communications materials, storyboards, and interface designs. Within this chapter, you will build their core knowledge, turn scribbles into distinct images, and grow in confidence. You will identify relevant concepts and items for visual representation based on your own studies and practices, sketch, and solidify these concepts and items into simple icons or images, identifying where and when to simplify, or use detail. Further, you will refine and develop these concepts and items with practice and build your own, personally relevant, visual library.

Mastering visual storytelling is a valuable skill. There are many ways to tell a story with pictures—or, in this case, sketches! You’ll hear this described in many ways: storyboard, comic, vignette, illustrated scenario, sketchnote, and so forth. In this chapter, we describe the basic process of telling a story with images as a ‘visual narrative’ because it can encompass all of the above and allows us to share the process without getting too bogged down in terminology. There are some distinctions which might be helpful to share; so we will describe them in this chapter. A visual narrative is simply a way of visualising a story, a sequence of events. Comics can also be described as scenarios—what we call ‘visual narrative’ differs between practitioners and fields. Someone working in UX will likely have a storyboard or scenario, an illustrator or artist might make a comic (or a graphic novel if it is very long!). In reality though, there are no hard distinctions in terms of content, as long as the meaning and story you are trying to convey is clear, and you frame your work appropriately for the domain it will be used in.

It is widely accepted in human-computer interaction (HCI) that usability lies in our interaction with a product, service, and environment, measured by observing performance, satisfaction, and acceptability. To this end, there is an overlap between usability and accessibility. Accessibility designates that digital products, services, and environments we create are perceivable, understandable, operable, robust, and encompass the range of human diversity, i.e. usable for all. This chapter aims to provide insight and put forward concrete techniques to improve the accessibility of your sketches. We cover the accessibility of sketches in HCI and beyond, with descriptions of best practice and examples, e.g. the use of screen readers and the need for text alternatives (alt text), and how such measures also support search engine optimisation. We also introduce novel ways of making sketching accessible, such as narrative alt text. This chapter helps you understand that accessible sketches are essential, identify different types of disabilities and the actions you can take to make your sketches accessible to people with specific disabilities, and practice making your sketches accessible using sketches you have created previously.

How can we ask others to sketch for us, what might we gain from this, and how can we analyse their sketched imagery? This chapter directly follows on from Chapter 11 and covers what information or resources to provide to people, best practices and ideas for gathering sketches, and other ways of working with sketching and people. We also provide advice for building confidence in your participants (or peers), as well as designing and running sketching-based user studies or workshops. Remember how you felt starting to sketch for the first time? When you ask other people to sketch for you, they will feel the same way and won’t always have the time to build the confidence that completing this course will allow. So we suggest you lead by example. Sketching together also means working with peers and colleagues and even continuing practice with friends. This chapter should enable you to engage participants and peers in sketching activities, learn about the value and use of participant sketches, utilise co-sketching to improve your skills and the skills of those around you, and understand ethics and consent for sketching collection.

Although we obviously advocate communicating visually with sketches, it is rare that a complex concept or page of multiple sketches can be fully described with the drawn line alone. If you are going to use your sketches as a form of communication or use them in your writing and research or studies, then it helps to title, annotate, and direct the viewer to each relevant section in turn. To do this, we necessarily use text, connectors, and colour to curate the gaze. This chapter should enable you to use text confidently in different weights and styles, connect and separate sketches on a page in a variety of creative ways, and develop a colour palette for your sketches that works for you and your projects. This chapter includes details on textual information, shapes, connectors, and separators—how do we link concepts whilst sketching, and how can we use these to emphasise points and provide clarity in our sketches?

The world of meetings and lectures was turned on its head during the advent of the COVID-19 pandemic and subsequent lockdowns by various world governments. Rather than nipping along to your colleague’s office to ask a quick question, chat functions have become the norm, with organisations using digital suites to connect people. Online meetings spread from a rare event during the week to full days in front of the screen, which also meant online teaching. So how did this impact the delivery of creative, hands-on courses, such as sketching? And given the new ‘hybrid’ world we live in, how can we utilise these changes to maintain the impact of sketching in human-computer interaction (HCI)? We live in a world where sketching can now transcend continents, so how do we work together on sketching activities when we aren’t even in the same room? This chapter focuses on the best practice and advice for sharing and carrying out remote sketching sessions with colleagues, team members, students, and research participants. We describe useful resources and tools (e.g. online whiteboards and 3D environments) and how sketching directly in digital media combines with hand-drawn sketches and uploading.