Our current PhD students and their projects

The first round of PhD recruitment commenced in November 2017. The Centre received more than one hundred expressions of interest in a highly competitive round. Of these, fifty made full applications, twenty-six made the shortlist and ten were interviewed.

We were delighted to recruit the following five PhD students with their transformative and Interdisciplinary projects.

Cultural representations of self-harm as experienced and interpreted by individuals who have self-harmed

Summary:

Self-harm is not frequently represented in literature and visual media; this may impact disclosure of self-harm and help-seeking. The project aims to explore what cultural representations are currently available to individuals who self-harm and how individuals who self-harm feel they are valuable with regards to understanding their own experiences and discussing them with others. This will build on existing analyses of film and literature to discuss reception and the work of self-narrativisation and provide insights into the relationship between discourse and experience. The project will consist of an interview study and a review of cultural texts.

Self-harm (for which I use Steggals’ definition of “an act, normally a repeated, habitual act, which in some way causes direct harm to the body but one where the focus and purpose of the act is this harm itself and not some other goal” (2015, p. 9)) is widespread. It is estimated that around 10% of young people self-harm at some point. There has been a great deal of valuable work aimed at destigmatising self-harm, and there are many online resources which work to give advice, and to combat harmful myths. However, open, nuanced portrayals of self-harm are still rare in literature and visual media.

Despite the availability of accurate information about self-harm, the rates of help-seeking among adolescents who self-harm are extremely low (Hawton et al., 2002). Young people are more likely to initially approach informal contacts rather than to disclose to a medical practitioner (Kleinberg et al., 2013). Disclosure of self-harming behaviour to friends, parents, or teachers can be an important step in the process of accessing support or help but could be made more difficult by the lack of available cultural representations of self-harm. It seems instructive to examine what cultural narratives and representations are currently available to individuals who self-harm, how individuals who self-harm feel they are valuable with regards to understanding their own experiences and discussing them with others, and what gaps might productively be filled. I intend to work from a postmodern perspective, which sees experiences and subjectivities as discursively constituted or constructed, and which sees cultural and social ‘artefacts’ or sources as elements of broader discursive forces.

Research questions

  1. What are the cultural representations of self-harm in literature and visual media currently available to or embraced by young people in the UK who self-harm? How are these representations and the reactions to them impacted by gender, race, class, and sexuality?
  2. How do young people who experience self-harm use references to literature and visual media to make sense of their experiences, or to discuss their experiences with others?
  3. In what ways do young people feel that cultural representations of self-harm could be more helpful to them in narrativising and discussing self-harm?

The Cultural Contexts of ME/CFS

Context

Myalgic Encephalomyelitis also known as Chronic Fatigue Syndrome (ME/CFS) remains at present an ‘unexplained illness’. Currently without confirmed biomarkers for diagnosis, its aetiology and processes remain mysterious, its epidemiology difficult to define, its diagnostic criteria contentious and its treatments even more hotly debated and mired in conflict. The impacts of its chronicity – often lasting decades or a lifetime – and of its uncertain status on the lives, identities and relationships of patients and their families are still poorly understood and there are as yet no culturally focused studies of contemporary ME/CFS in aesthetic production, media and popular discourse. Even its relationship to the historical disease label ‘neurasthenia’ is contested and snared in debates around ‘hysteria’, psychosomatics, and pathologies of gender, and the divisions between psychiatry and ‘physical’ medicine.

However, the next five years could prove to be something of a tipping point in interest and progress in ME/CFS research. There is a growing body of biomedical research coming on-stream, including ‘big data’ studies, identifying potential ME/CFS biomarkers for the first time. As of September 2017, substantial NIH grants have been awarded in the US for breakthrough biomedical studies and the establishment of centres of research excellence on ME/CFS. In 2014 the NIH ‘Pathways to Prevention’ workshop on ME/CFS stressed the importance of studying aspects of individual identity and relationship, perceptions, communication and stigma, to combat the current ‘disconnect’ in understandings between patients, researchers and clinicians – elements of ME/CFS which my research aims to address, as I shall set out below.

In the UK in 2013 the establishment of the CFS/ME Research Collaborative (CMRC) aims to promote the highest quality evidenced-based research and brings together researchers, funders and charities in collaboration to identify research priorities and increase awareness. Additionally, in the face of emerging evidence and patient criticism, NICE embarked in 2017 on a revision of its guidance on diagnosis and treatment (publication due 2020). This presents exciting current opportunities for collaborative working, and for policy intervention through comment on the NICE draft scope either via stakeholder organisations or as an individual. The NICE evidence surveillance process similarly indicates a need for research on the prevalence/incidence of the illness, the best ways of delivering care, its natural course – including life-course studies and definitions of recovery ¬ and on the best ways of measuring outcomes in research. My proposed research aims to address a number of these issues and, I believe, is therefore very timely. I will be seeking to engage in collaboration with CMRC organisations/institutions and to produce understandings and evidence relating to cultures of ME/CFS in the context of these ongoing developments and concerns.

Research Questions

  • What does ME/CFS ‘mean’ in contemporary society, who defines these meanings, and how does this reflect the ways in which medical practice, public health policy, socio-economic imperatives and cultural discourses (including those around gender and identity) interrelate to structure the specificity of illness experience?
  • To what extent can ME/CFS be considered culturally constructed, and to what extent a ‘natural kind’? How is the contemporary condition related to closely aligned syndromes from the past, such as ‘neurasthenia’ and ‘effort syndrome’ – is what is now known as ME/CFS a changing label for a constant kind?
  • What makes ME/CFS a site for intense political and cultural contestation? How does the status of ‘unexplained illness’ challenge medical and other hegemonies and social constructions around health such as expectations of prolonged well-being, responsibility, economic productivity, family & community, reciprocity, patient-clinician power structures, mind/body dualism, the status of psychiatry, or the biology of ‘somatisation’?
  • How does the embodied experience of this nexus of competing discourses affect patients’ lives, identities and social relations, and how does this play out over the life-course of patients with chronic illness?
  • What part do patient narratives play in the construction of an ‘illness identity’ in ME/CFS? Are patient narratives an attempt to subjectively mediate conflicting cultural dynamics over time in order to survive, or are they better understood as challenges to the ways in which health, power and social relations are institutionalised and well-being and illness are decided and defined?
  • What needs to change in the ways we do medicine – for example in how we read and give significance to evidence from narratives of lived illness experience or patient definitions of meaningful recovery – and what needs to change in patient understanding, beliefs and attributions of meaning to reconfigure discourses of stigma and exclusion and to enhance patient-clinician dialogue and cooperation for better outcomes?

California baby: An exploration of the interplay between legal structure and surrogate agency and lived experiences in the UK and California

Background

This project aims to create and sustain a culture and environment that promotes the health and wellbeing of surrogates by developing an alternative legal framework of surrogacy regulation, informed by an examination of surrogates’ lived experiences. Surrogacy arrangements have become an increasingly common and effective means for circumventing childlessness and infertility, conditions that can have devastating consequences on individual emotional health and wellbeing, and general life satisfaction (Cosineau & Domar, 2007). While the practice of surrogacy has benefitted from advances in medical technology and progressive reductions in associated stigmas, current surrogacy regulation, as enshrined in the UK Surrogacy Arrangements Act 1985, has failed to keep pace. As such, there is the potential for the emergence of informal surrogacy arrangements, whereby the parties are forced to rely on trust rather than legal security for fulfilment. Jurisdictions where commercial surrogacy is legal, notably California, provide an apt comparator as to how the law may be changed.

The extant legal framework within the UK is outdated and has caused confusion over how surrogacy is being practiced, as surrogates are paid “reasonable expenses,” with amounts varying from £3,000-55,000 (Re A, B, and C [UK Surrogacy Expenses]). Commercial surrogacy may be taking place despite the prohibition, thereby enabling the emergence of a “surrogacy market” (Re D), resulting in the potential for the exploitation of vulnerable women acting as surrogates, both domestically and abroad. As such, this project aims to evaluate the existing surrogacy regulation and propose reforms that will bring it up to date with societal and medical advances. In doing so, this research constitutes a timely contribution to an important issue in women’s health and wellbeing, as reflected by the inclusion of surrogacy regulation in the UK Law Commission’s 13th Programme of Law Reform.

This project benefits from adopting an interdisciplinary approach to surrogacy regulation, combining socio-legal analysis with a feminist sociological exploration of the lived experiences of surrogates and women wanting to act as surrogates (“would-be-surrogates”). I intend to employ a mixed methods approach, combining comparative legal doctrinal research into the UK and California’s legal regulatory approaches to surrogacy arrangements, with qualitative empirical research, by exploring the lived experiences of surrogates and would-be-surrogates. The goal is to understand in what ways the current regulatory framework is inadequate and how to resolve the issues, while considering the effect of current and potential legal frameworks on the women involved in surrogacy.

Limited research has been conducted into the experiences of surrogates (Blyth, 1994; Javda et al., 2003; Imrie & Javda, 2014), and little is known about the demographics of surrogates in the UK. In addition to looking at the relation between the lived experiences of surrogates and its effect on reproductive agency, their health and wellbeing, this research will address the lacuna in qualitative empirical research in this field by exploring and comparing the intersection of surrogates’ and would-be-surrogates’ experiences with the socio-cultural legal structure of both jurisdictions.

This project will provide opportunities for extensive engagement with publics involved in surrogacy, as well as meaningful impact on future regulation of surrogacy. Reaching out to surrogacy organisations, fertility support groups, and LGBT+ family groups for the qualitative empirical research component allows for an open dialogue with underrepresented demographics about their understanding of reproductive agency, thereby informing improvements into surrogates and would-be-surrogates’ reproductive rights and health and wellbeing, as well as elucidating the prevalence of surrogacy. Concomitantly, a qualitative investigation will enable an honest expression of the surrogates and would-be-surrogates within the legal context, furthering the goal of improving reproductive rights, and creating a healthier public.

The Law Commission does not generally conduct its own empirical research, and as such this project would provide an important source of information for them, facilitating discussions and proposals into alternative legal frameworks. The intention is to disseminate my findings to the wider public, focussing on healthcare professionals involved in fertility treatments and health networks dedicated to fertility. The conclusions from this project will provide evidence and propose a legal structure that empowerssurrogate and would-be-surrogates’ reproductive agency and transforms their health and wellbeing over the course of their lifetime.

Research Questions

  1. How has the current regulatory framework for surrogacy affected surrogates’ experiences in the UK and in California?
  2. How could the UK legal framework change as to promote the reproductive rights, health, and wellbeing of surrogates?
  3. Is it feasible to adopt a contractual legal framework, such as the Californian approach, for surrogacy arrangements in the UK?

Virtual Nature: exploring how culturally enhanced digital experiences can affect wellbeing and connectedness to natural environments

Overview and aims

The aim of the proposed research is to evaluate the effect of ‘culturally enhanced’ virtual reality (VR) nature experiences on psychological wellbeing, connectedness to nature and environmental empathy. It will focus on people who face significant barriers to visiting ‘real’ natural environments and is based on answering four key research questions:

  1. To what extent can current VR-based natural environments (without cultural elements) positively affect wellbeing and connectedness to nature?
  2. What does the relevant literature say about the cultural elements that might enrich these experiences and how can stakeholders inform these insights?
  3. Does the inclusion of cultural elements in VR environments enrich wellbeing outcomes and/or connectedness to nature?
  4. What is the feasibility of implementing a VR intervention for our target populations?

The project would centre on a participatory research approach, gaining ongoing inputs from a diverse range of stakeholders to help guide its development. The research will be highly transdisciplinary; including the fields of medicine, humanities, environment, and the arts. It will draw together commercial, third sector and academic partners to inform and scope feasibility of a real-world application.

Background

A growing body of evidence, much of it building on the concept of Cultural Ecosystem Services, shows that natural environments are associated with a range of positive physical, psychological and cognitive outcomes, with epidemiological studies also demonstrating these effects at the population level.

It is largely assumed that these benefits require ‘direct exposure’ to the natural world. For many people however - such as those in long term care, with a physical disability or in deprived and urban areas - contact with the natural world is often impossible, irregular, or impoverished. We face a challenge where many of the people who would stand to benefit most from spending time in nature are, in many cases, those least able to access it.

New developments in the field of VR offer a tantalising opportunity to overcome these barriers, with research in this nascent field already suggesting that virtual and vicarious experiences of nature can help to reduce feelings of pain and anxiety, as well as other outcomes that society values, such as enhancing connectedness to nature, environmental empathy and pro-environmental behaviours.

It is important that developments in virtual nature recognise the chequered nature of pastoral history – which has given us an idealised and pastiched view of the natural world – and are thus informed by concepts such as ‘cultural environmentalism’; promoting health and healing in ways which also embody, social, cultural and sustainable elements. Moreover, cultural experiences (such as going to the theatre) have been associated with higher life satisfaction and there may be an additive effect of combining these with nature-based interactions. An evidence-based approach is needed to understand how practices such as music, storytelling, and farming lore might impact on the wellbeing benefits of virtual environments and their ability to foster environmental empathy.

Since the relationships between culture, health and wellbeing are mediated by a range of lived experiences, any attempt to understand the diverse perspectives that give meaning to nature-based cultural interactions must involve a range of stakeholders and invoke the principles of participatory research. Indeed, recognising the expert knowledge held by various communities and involving them throughout the research process, from study design to data collection and analysis, has been shown to positively influence the development of a study’s questions and the subsequent mobilisation of research findings. By empowering people to take control of the factors which influence their health and wellbeing, engaged approaches have particular strengths in health research and the voices of various stakeholders would be vital in any study seeking to unpick the mechanisms by which ‘immersive nature’ might directly impact wellbeing, learning and behaviour across the life course.

Phenomenology & Ageing

Abstract:

My proposed research project will be a deep phenomenological study of ageing, on the basis of which I will develop a novel contribution to critical gerontology. This latter objective will be developed through engaged research with various publics affected by the lived reality of ageing, from carers through service providers and local authorities to communities with elderly populations. The outcomes of my fundamental phenomenological research, the commitment to the ethos of engaged research, and the interdisciplinary synthesis with critical gerontology, will all make original contributions to knowledge in these fields. Taken as a whole, the aim of my research will be to shed new light on the conditions under which it is possible to best serve the living priorities and goals of ageing people as their health changes over time.

The phenomenological work will examine how the temporal conditions and experiences of ageing are structured, and consider the possibilities for narrating these lived experiences. A rich understanding of the structures of embodied consciousness will be the fundamental basis on which the project will be established, focusing on such phenomenological categories as intentionality, meaning and hermeneutics, temporality and its dephasures, memory, the lived body, lifeworld, and intersubjectivity. This will be premised on an immersive study of key primary texts by Husserl, and supplemented by critical phenomenological texts by Merleau-Ponty, Ricoeur, Levinas and Derrida. The subsequent opening of “generative” phenomenology will allow me to consider consciousness as openness to alterity, and the vulnerability and senescence this openness entails.

Where this literature has been related to ageing in recent research, ageing has been construed more broadly as ‘living through time’ (i.e. at any point during the life course). I therefore intend to extend this analysis by taking up these themes with respect to old age in particular. Old age does not manifest in any single given way, but can nonetheless be linked to phenomena such as nostalgia, senescence and withdrawal. My work will therefore develop a phenomenology of ageing to articulate the particular kinds of lived experience that arise in old age, as the homeworld starts to shrink and the alienworld expands.

Phenomenology functions as both as subject and methodology across the project, in order to avoid prefiguring a category of ‘the elderly’ as such. Engagement with relevant communities will overarch and inform the phenomenological research. In collaboration with engaged partners, we will open a dialogue to make possible a critical understanding of normative determinants of ageing and how they affect the lived experiences and possibilities for aged people. This collaboration will demonstrate new kinds of evidence to inform future transformational engagement work such that elderly people are able to self-narrate their lived experience, and - when the time comes - the caregiving community can facilitate their best possible living and ageing.

Proposed Research Questions:

  • In what does the phenomenology of ageing consist?
  • How does this phenomenological account of ageing challenge dominant gerontological discourses with respect to health and wellbeing?
  • How do normative cultures of ageing shape the lived experiences and possibilities for the elderly?
  • What are the conditions under which elderly people can live based on their own priorities and goals as their health changes over time?