2,168 research outputs found

    Motherhood to Motherhoods: Ideologies of the “Feminine”

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    The development and initial validation of an outcome measure for children and young people with life-limiting and life-threatening conditions

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    BackgroundThere is no validated outcome measure for use in children's palliative care outside of sub-Saharan Africa. Development of such a measure is required to realise the benefits of patient-centred outcome measure use that has been demonstrated in adult palliative care. Previous research into what is important to children and young people with life-limiting and life-threatening conditions has primarily focused on those with a cancer diagnosis. Much of this pre-existing research focuses on the perspectives of proxies, rather than those of the child or young person.AimTo develop an outcome measure, the children's palliative outcome scale (C-POS), for use by children and young people with life-limiting and life-threatening conditions and their families, and to establish face and content validity, comprehensiveness, comprehensibility, feasibility, and acceptability of use.MethodsA sequential mixed-methods study was conducted in three phases, following the principles of patient-reported outcome measurement design described by Rothrock and the Consensus-based Standards for the selection of health Measurement Instruments (COSMIN).Phase 1 - gathering inputA systematic review was conducted with the aim of appraising the evidence on optimal recall period, response format and mode of administration to enable children and young people to participate in self-reporting on their health outcomes. A young person's advisory group was also consulted on the same topic.To inform face and content validity of C-POS a semi-structured qualitative interview study was conducted to seek the perspectives of children and young people, their parents/carers and siblings, health care professionals and NHS commissioners on priority symptoms, concerns, and care priorities. Participants were also asked to identify their preferences for the design of C-POS, in terms of recall period, response scale format and administration mode.Phase 2 - item generationPart 1: Parents and professionals with experience in caring for a child or young person with a life-limiting or life-threatening condition participated in a three-round modified ranking-type Delphi survey with the aim of establishing which outcomes identified in phase 1 of this thesis should be included in C-POS.Part 2: The young person’s advisory group were asked to select their priority outcomes from the items ranked in rounds 2 and 3 of the Delphi survey.Part 3: An item generation meeting was conducted with key stakeholders to develop initial C-POS versions based on the evidence collected so far.Phase 3 - item improvementCross-sectional cognitive interview study to establish acceptability, comprehensiveness, and comprehension of the initial C-POS versions within the target population.ResultsPhase 1 - gathering inputSystematic review: Findings showed that children under five years old cannot validly and reliably self-report health outcomes. Face scales demonstrated better psychometric properties than visual analogue or Likert scales. Computerised and paper scales generally show equivalent construct validity and children prefer computerised measures. Children seven years old and younger often think dichotomously so may need two response options. Those over eight years old can reliably use a three-point scale.Qualitative interview study: 106 participants were recruited: 26 children, 40 parents, 13 siblings, 15 health care professionals and 12 commissioners. Children found a short recall period and a visually appealing measure with 10 questions or fewer most acceptable. Children with life-limiting conditions were more familiar with using rating scales such as numeric and Likert than their healthy siblings and emphasised the importance of completing the measure alongside interactions with a healthcare professional. Parents assumed that electronic completion methods would be most feasible and acceptable but a small number of children preferred paper measures.Participants described many inter-related symptoms, concerns and care priorities impacting on all aspects of life. Data revealed an overarching theme of pursuing ‘normality’, described as children’s desire to undertake usual childhood activities. Parents need support with practical aspects of care to help realise this desire for normality.Phase 2 - item generationPart 1: Delphi survey (n=82). Ranking agreement between participants increased over the rounds, indicating movement towards consensus. Agreement between professional and parent ranking was poor. Professionals prioritised physical symptoms, whereas parents prioritised psychosocial and practical concerns.Part 2: 22 children and young people attended the young person's advisory group. They prioritised items related to living a ‘normal life’ such as seeing friends and attending school, in addition to items prioritised by the adult participants in the Delphi survey.Part 3: 22 participants attended the item generation meeting. Fiveage/developmental stage appropriPhase 3 - item improvementForty-eight individuals participated (36 parents; 12 children) in cognitive testing of the C-POS versions. This revealed challenges in the acceptability of some items for parents of non-verbal children and refinements were made. C-POS content and length were acceptable, and all questions were considered important. Parents reported that completing a measure that asks about what matters may be distressing but this is anticipated and acceptable.ConclusionsThis thesis demonstrates the development of the first UK patient-centred outcome measure for use with children and young people with life-limiting and life-threatening conditions and their families. By following established methodological criteria for patient-centred outcome measure development this thesis demonstrates that CPOS has robust face and content validity and is feasible and acceptable for use within the target population.</div

    An Exploration of Life With a Chronic Skin Condition

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    Despite considerable prevalence and clinical impact, chronic skin conditions have received little sociological attention. This research examines the social implications of living with a chronic skin condition, based on the thematic analysis of in-depth interviews featuring 24 adults with experiences of eczema, psoriasis or acne. Drawing on Bourdieusian field theory and corporeal phenomenology, this thesis brings new insight to the disembodying experiences of disordered skin, strategies enacted for their management, and the wider implications of disordered skin on social participation. Illustrating experiences of social dys-appearance, individuals are found to negotiate stigma, both enacted and perceived, based on normative expectations of bodily presentation. Employing the notion of aesthetic capital, disordered skin is shown to impair possibilities for aesthetic distinction and undermine a sense of capability in personal and working roles. Faced with disabling spatialities and difficulties surrounding disclosure, individuals develop anticipatory dispositions and a range of time-space tactics. The corporeal dys-appearance of disordered skin demands that individuals respond through laborious practices which often take on Sisyphean attributes. A novel concept of “containing” is introduced as a type of skin work reflecting how managing disordered skin requires attention to clearing up exudations of “dirty” bodily substances, such as skin flakes, blood, pus, and the remnants of topical treatments, to avoid soiling external environments. Pharmaceutical treatments are found to be a source of deep ambivalence. Moreover, individuals value agency in their treatment protocols and, where capital resources allow, enact resistance to medical authority through experimentation with alternative strategies and practices of self-medication. This study highlights a need to accommodate the additional labour demands of life with chronic skin conditions, and the desire for agency in treatment, through policy and practice measures. Further efforts are needed to address the impact of inequalities of access to resources on the burden of managing chronic illness

    Fictocritical Cyberfeminism: A Paralogical Model for Post-Internet Communication

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    This dissertation positions the understudied and experimental writing practice of fictocriticism as an analog for the convergent and indeterminate nature of “post-Internet” communication as well a cyberfeminist technology for interfering and in-tervening in metanarratives of technoscience and technocapitalism that structure contemporary media. Significant theoretical valences are established between twen-tieth century literary works of fictocriticism and the hybrid and ephemeral modes of writing endemic to emergent, twenty-first century forms of networked communica-tion such as social media. Through a critical theoretical understanding of paralogy, or that countercultural logic of deploying language outside legitimate discourses, in-volving various tactics of multivocity, mimesis and metagraphy, fictocriticism is ex-plored as a self-referencing linguistic machine which exists intentionally to occupy those liminal territories “somewhere in among/between criticism, autobiography and fiction” (Hunter qtd. in Kerr 1996). Additionally, as a writing practice that orig-inated in Canada and yet remains marginal to national and international literary scholarship, this dissertation elevates the origins and ongoing relevance of fictocriti-cism by mapping its shared aims and concerns onto proximal discourses of post-structuralism, cyberfeminism, network ecology, media art, the avant-garde, glitch feminism, and radical self-authorship in online environments. Theorized in such a matrix, I argue that fictocriticism represents a capacious framework for writing and reading media that embodies the self-reflexive politics of second-order cybernetic theory while disrupting the rhetoric of technoscientific and neoliberal economic forc-es with speech acts of calculated incoherence. Additionally, through the inclusion of my own fictocritical writing as works of research-creation that interpolate the more traditional chapters and subchapters, I theorize and demonstrate praxis of this dis-tinctively indeterminate form of criticism to empirically and meaningfully juxtapose different modes of knowing and speaking about entangled matters of language, bod-ies, and technologies. In its conclusion, this dissertation contends that the “creative paranoia” engendered by fictocritical cyberfeminism in both print and digital media environments offers a pathway towards a more paralogical media literacy that can transform the terms and expectations of our future media ecology

    Lived experiences of gay men in their achievement of leadership in South African organisations

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    There is a noticeable absence of the voices of gay men in leadership in South African government and corporate organisations. This absence of visible gay male leadership in organisations in South Africa, coupled with the limited research in a South African context, gave rise to the research topic. This qualitative study investigated the lived experiences of gay men in their achievement of leadership with a focus on the possible barriers or obstacles they may have encountered and overcome to realise their leadership positions. The study was conducted through interviews with South Africa citizens working in mainstream South African organisations; some participants also had personal experiences working in multinational organisations allowing for a comparison between the multinational workspace and the South African workspace. By utilising snowball sampling methods, eleven participants were purposefully selected from a sample of self-identified cisgender gay men. The selected participants had all openly revealed their same-sex sexual orientation to the organisations where they worked and were all working in senior leader roles. Semi-structured individual interviews were conducted with the participants and later transcribed, and rigorously analysed using Interpretive Phenomenological Analysis methods. The findings of the study identified that gay cisgender males in mainstream South African organisations do indeed encounter barriers relating to prejudice based on their same-sex sexual orientation. These barriers may impede their professional development and growth into senior leadership positions. It was found that some gay men possess internal resources or enablers that allow them to overcome existing barriers and advance into successful leaders in their careers. Similarly, progress has been made in some South African organisations, allowing them to provide a culture and environment of safety and support for gay men, enabling these men to realise their aspirations of senior leadership. By combining senior leadership who are supportive and involved in LGBTI+ affirmative practices and implementing workplace processes like LGBTI+ forums and inclusivity, and awareness training programmes, organisations may create cultures where LGBTI+ people may flourish and advance to senior leadership roles in South African organisations.PsychologyPh.D. (Consulting Psychology

    British Bangladeshi Muslim Women’s In-Law Relationships: A Narrative Analysis

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    Despite being a major feature of everyday life, research on in-law relationships has received relatively scant attention in comparison to other close relationships. In-law relationships have mostly been portrayed negatively in popular culture, influencing and reflecting the pervading negative attitudes held by wider society. This has provided a narrow and restrictive view of affinal relationships. In-law relationships are found across the globe, and literature suggests that culture and its underlying values play a major role in shaping the nature and dynamics of such relationships. However, the majority of research has been dominated by the mother-in-law/daughter-in-law dyad, with little attention to the wider context. Using a post-colonial feminist framework and narrative analysis, the current research documents the stories of 10 British Bangladeshi Muslim women and their subjective experiences of in-law relationships. The research highlights the subtle and nuanced way they navigate in-law relationships and exercise their agency. It also demonstrates how intersecting markers of difference impact experiences of agency and the shaping of their identity. The research highlights four major themes from the analysis: (1) “It’s a family marriage” (2) Rising tensions (3) Tug of war – the role of husband and (4) Developing a survivor’s identity. A description of these themes and related subthemes are discussed. The findings of the present study challenge Eurocentric models of feminism and demonstrate the diversity of women’s experiences and identities. They also reveal how gender intersects with other markers of identity that shape the participants’ social realities. They also point to the urgency of highlighting the role of the wider family in the perpetration of abuse against women. The research discusses further implications of findings for academics, clinicians, policy, and the wider community, and recommends suggestions for future research

    From novel to webcomic:Transmedial translation and collaborative process in graphic storytelling

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    The subject of this PhD will analyse the collaborative process within a creative team and the practice of writing as research when it explores a new medium under emergence, in this case webcomics. As the project is concerned with the transposition of my trilogy of novels, I assumed the responsibilities of translating the prose into script and creating the story boarding. After the first brainstorming session with the illustrator on panels design and flow, changes are negotiated by the team and worked by the artist in the final draft of the panels. It is important to note that, while the illustrator’s input is a vital part of this project, choices concerning the structure and the narrative of the project are in the hands of the author. The research project will take into consideration the dynamics of such partnership and how the loop of creating and feedbacking challenges previously established creative processes while it helps to set new ones. Similarly, as the project has taken the shape of a webcomic, the behaviour of online readers and their response to the content will be monitored through tracking tools on media platforms to see if and to what extent (likes, shares, visit prior posts) readers interact, thus affecting dissemination. This project will research how modern politics, historical events (the Italian Years of Lead) and attitudes feed the narrative, and show how these are balanced and blended with fictional elements. It will also take into consideration the inner mechanisms of both genre and medium as tools capable of dissecting, analysing, and offer alternatives to the questions asked by the contemporary discourse. Finally, as an Italian/English bilingual Fantasy writer, I will reflect on how writing in English has actively shaped my work and argue that my conscious decision to write in English aims at placing my work within the British comic books’ tradition. This choice is also motivated by the lack of an Italian academic tradition in studying creative writing and genres other than literary fiction

    Family Talk: Deontic Rights and Initiating Interaction in Domestic Space

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    This thesis investigates the initiation of talk-in-interaction within domestic space. Using the research methods of Conversation Analysis (CA), I examine the practices family members use to initiate social interaction and explore the claims to, and displays of, entitlement and authority within these sequences of action. Using naturally occurring data recorded over a span of 100 days for the 2008 fly-on-the-wall documentary television series, The Family, I examine the production of summonses, greetings, and the deployment of interrogatives to implement suggestions and complaints, and their responses. This analysis focusses on both the sequential and social implications of initiating sequences of talk-in-interaction, specifically examining actions produced in and around doorway thresholds within the home, for instance, a summons deployed at a closed bedroom door, or a greeting produced after coming home or coming into a room. Through the use of linguistic and bodily resources, parties construct their turns-at-talk as more or less deontically entitled: firstly, through directing their own or another’s current and future actions; and secondly, in the determination of what is or is not appropriate regarding current or previous (in)actions. Furthermore, through the initiating actions they implement and the deontic entitlements they claim, parties negotiate and display their orientations to theirs and their co-participant’s claimed identity and social roles, as well as manage their relationships with one another. All together, this study shows how deontic claims to authority and entitlement are displayed and managed by interlocutors in initiating sequences, and how the interplay of the physical space with verbal and embodied resources shapes their subsequent trajectory

    Postmodern Classicism: A Practice-Based Investigation

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    This thesis establishes a critical framework for a grassroots literary genre, postmodern classicism (pomoclassicism), which was founded by myself and Stephen Spencer II circa 2010. Postmodernism here signifies the intellectual and cultural concerns which were tantamount at the latter half of the twentieth century, and by extension, classical writing simply refers to that which was apparently before the postmodern, in a heuristic sliding scale oriented around canonicity and nostalgia. A portfolio of creative writing accompanies critical efforts at engaging with and describing the foundational assumptions of the western canon, from which much of the creative work is appropriated. My research writing is grounded in a reformulation of the early modern notion of canonical literature (circa 1700): ‘eternal life’ through literary preservation, which is itself the paradoxical material upon which the ‘canon’ is founded. This theme is taken up in the oeuvre of Goethe. Goethe’s writing relies on the paradoxical reconciliation of opposites known to the author as ‘polarity, ’ and influences how Friedrich Nietzsche, Sigmund Freud, and Franz Kafka understand canonical literature itself. Goethe, Nietzsche, and Kafka’s use of appropriation has influenced my own creative work, which includes redaction writing, erasure, and other forms of narrative appropriation. Kafka will be shown to have taken up the theme of ‘polarity’ in his own literary writing, as examined by Benjamin and Deleuze and Guattari. Finally, I will draw upon the critical writing of Sabina Spielrein, whose concepts of simultaneous creation and destruction and erotic fusion are the conceptual core of my own poetic approach, and who provides a Nietzschean critique of the early modern notion of ‘eternity.

    Welcome to Mitchell’s Plain

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    Under the apartheid regime, South Africa’s Mitchell’s Plain, situated close to Cape Town, was devised as a “model township.” A cutting-edge urban planning scheme would provide middle-class Coloured people—evacuated from their homes by racialised rehousing programmes—with exemplary living conditions. This flagship for the regime was inaugurated with fanfare in 1976, and heavily publicised not just within South Africa but also in the international press. Cohorts of political leaders and journalists were invited to admire first-hand how racial segregation could be paired with progressive social planning. A documentary film was commissioned for worldwide distribution: Mitchells Plain (1980). Like other well-laid plans, however, Mitchell’s Plain would foil the designs of its architects. The vaunted utopian township was, for its inhabitants, deeply flawed: essential facilities such as schools and transport were thoroughly inadequate to the population’s needs. These sources of frustration generated a groundswell of civic activism. While the government had banked on separating the Coloured population from the national liberation movement, in 1983, Mitchell’s plain acquired important symbolic status as the birthplace of the United Democratic Front, an umbrella organisation of anti-apartheid associations. This event marked a turning point in the history of South Africa’s struggle for freedom. This study chronicles the fortunes of Mitchell’s Plain: its conception and role as propaganda for the apartheid regime. It draws on official documentary sources, but also on interviews with the various social actors whose life-experience conveys a very different image of the process, to reconstitute from a critical and historical perspective, the ill-fated window-dressing efforts of the National Party government during its declining years
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