NIHRDataInsights/HRCSData huggingface dataset:
Title: Health Professional Responses to Deathbed Phenomena: Implications for medical knowledge and care
Funder: Wellcome Trust

Abstract: Meaningful dreams, visions and coincidences are a remarkably common feature of the dying process. While patients and families report their profound spiritual significance, mainstream clinical literature explains them in materialist terms. This project asks how health professionals respond to such events on the ground, whether they reflect this materialist approach or if there are examples of healthworkers engaging in more ontologically and epistemologically open ways. The research will explore how philosophical responses influence the day-to-day practices of care. It will also ask whether variation in interpretations of such events runs along existing lines of social or cultural difference among both healthworkers and patients. I will take a methodologically interdisciplinary approach combining an ethnography of a hospice in-patient unit (utilising my experience as a palliative care nurse) with narrative interviews of staff who have responded to deathbed experiences. Drawing on feminist care theory, science and technology studies and the medical humanities this study will explore the significance of responses to deathbed phenomena for both clinical knowledge practices and patient care.

Lay abstract: People often experience meaningful dreams and visions in the last days of their life. Healthcare professionals who work with dying patients acknowledge these events, even using them to predict when someone is likely to die. However the content of these experiences tend to be dismissed as unreal. This can create a disconnect with patients / families who often find them emotionally and spiritually valuable. Does this disconnect affect the ability of healthworkers to effectively care for patients in such moments? Arguably if something is not real, it does not matter and things that do not matter do not require care. Through working in a hospice and interviewing health professionals my project will explore whether this is the case or whether nurses, doctors and other staff do take these experiences seriously. If so, what are the consequences for how we understand what matters and what does not in medicine more broadly?

Research activity codes: 8.1 ORGANISATION AND DELIVERY OF SERVICES
Health categories: MENTAL HEALTH;GENERIC HEALTH RELEVANCE
Title: Expression and Reception of Gratitude in Healthcare
Funder: Wellcome Trust

Abstract: Gratitude is an emotion essential to supporting communicative human relationships. The aim of this study is to elucidate ways in which gratitude is expressed and received in healthcare. Expressions of gratitude form a significant source of patient feedback, but, in contrast to the way complaints are handled, gratitude is often overlooked or played down. Multiple studies have found that supportive culture in the workplace is a good predictor of patient satisfaction and staff wellbeing is linked to quality of care. The project consists of four interrelated phases to be carried out at the Royal Brompton Hospital: (1) analysis of past and present thank-you letters and other gestures of gratitude from patients; (2) mapping of sites of gratitude displays; (3) ethnographic fieldwork to investigate gratitude encounters; and (4) a series of workshops to share emerging findings and shape recommendations for practice. This study will make an important and original contribution to the field of gratitude studies. It will result in recommendations for improving dialogical relationships at a personal, interpersonal and institutional level. Although this study is localised to the Royal Brompton Hospital, its implications will be eminently transferable to a wide range of other healthcare settings.

Lay abstract: Gratitude is an emotion essential to supporting communicative human relationships. The aim of this study is to explore how gratitude is expressed and received in healthcare. Expressions of gratitude form a significant source of patient feedback but they are often overlooked or played down. A supportive culture in the workplace has been shown to be a good predictor of patient satisfaction, and staff wellbeing is linked to quality of care. The project consists of four interrelated phases: (1) analysis of past and present thank-you letters and other gestures of gratitude from patients; (2) mapping of sites of gratitude displays; (3) ethnographic fieldwork; and (4) a series of workshops to share emerging findings and shape recommendations for practice. This study will make an important and original contribution to the field of gratitude studies. It will result in recommendations for improving dialogical relationships at a personal, interpersonal and institutional level.

Research activity codes: 8.1 ORGANISATION AND DELIVERY OF SERVICES
Health categories: MENTAL HEALTH;GENERIC HEALTH RELEVANCE
Title: Rehabilitating the sexual or violent psychopathic offender: rethinking the ethics of crime-preventing neurointerventions from a welfarist perspective
Funder: Wellcome Trust

Abstract: For this project, I aim to investigate the thesis that administering neurointerventions to sexual and violent psychopathic offenders is rendered ethically permissible on the grounds of improving offender welfare; and that this, in turn, imposes a duty on states and criminal justice systems to develop, offer and perhaps even impose safe and effective neurointerventions as a condition of parole on some such individuals. My approach to this research is three-pronged. Firstly, I shall investigate whether neurointerventions geared towards 1) reducing libido in the case of sex-offenders and 2) increasing empathy in the case of psychopathic offenders, could plausibly be seen to improve the welfare of the individual upon whom the intervention is enacted. Secondly, I shall explore whether the promise of improvements to individual welfare afford a reason to judge the practice of employing neurointerventions ethically permissible. Thirdly, I shall examine whether this would impose an obligation on States to provide such neurointerventions. Key Goals • To explore an alternative justificatory framework for the use of neurocorrectives than that which is usually put forward; • To draw upon my biomedical, philosophical and psychological training to resolve the ethical questions raised by this sort of justification; • To deliver practical ethical guidance to policymakers.

Lay abstract: Substance-using individuals who have been convicted of criminal activity are frequently required to undergo neuropharmacological interventions to facilitate their rehabilitation within the United Kingdom criminal justice system. Should this practice be extended to sexual and violent psychopathic offenders? The permissibility of employing interventions which act directly upon the brain within criminal justice systems has been the subject of widespread ethical debate, with arguments in their favour typically justifying their use on public protection grounds. My research, however, approaches this ethical debate from an oft-overlooked and underdeveloped perspective. That is, I aim to investigate whether administering neurointerventions to convicted violent psychopaths and sex-offenders is rendered ethically permissible on the grounds of improving offender welfare; and whether this, in turn, imposes a duty on criminal justice systems to develop, offer and perhaps even impose safe and effective neurointerventions as a condition of parole on some such individuals

Research activity codes: 8.3 POLICY, ETHICS AND RESEARCH GOVERNANCE
Health categories: MENTAL HEALTH;GENERIC HEALTH RELEVANCE
Title: MA Medical Humanities: Bodies, Cultures and Ideas
Funder: Wellcome Trust

Abstract: This is a joint programme between HCA and ETCW, but also draws on expertise across the Humanities and Social Sciences at Birkbeck. It runs for one year full-time or two years part-time. Most students complete two core modules, two subject-specific option modules and a dissertation. But we also offer a coursework-only pathway, which is popular among students coming from health professions. Students taking this pathway complete the core modules and four option modules.The MA addresses the cultural complexity of historical and current health issues, including infectious diseases, preventative medicine, mental health, disability, expertise, authority and medical ethics. Additionally, students learn about the emergence and organisation of the medical humanities as an academic field and the debates that shape its identity and purpose.Many students use the MA programme to prepare for doctoral study or careers in health policy and management. Others use the MA to enrich established careers as health professionals, developing more reflexive practices and sensitive relationships with their patients. The original grant offered opportunities to students with disabilities and from disadvantaged backgrounds who would otherwise have been unable to afford postgraduate study. We would use the renewal to widen access and diversity, including opportunities for BAME students.


Research activity codes: 8.1 ORGANISATION AND DELIVERY OF SERVICES
Health categories: MENTAL HEALTH;GENERIC HEALTH RELEVANCE
Title: Imagining Technologies for Disability Futures
Funder: Wellcome Trust

Abstract: This project will undertake an interdisciplinary investigation of the imagining of the future relationship between disability and technology. Grounded in the research team's diverse specialisms, but united by three interdisciplinary cross-cutting themes and engagement with disabled participants, the project will explore: cultural and phenomenological narratives of disability, care and embodiment; assistive product design; and the manufacture of prototype companion robots for those with disabilities. We will focus particularly on the ways creative and theoretical imaginings of disability and augmentation inform and are informed by the practicalities of product design and creation, and how these are then experienced by service users and their families in our focus areas of Leeds, Sheffield and Dundee. The project will ask what models of imagined technological augmentation inform contemporary understanding of physical and cognitive disabilities, and how such models produce disability experiences, shape technological design change and production, and resulting predictions of future disability healthcare. Innovative research outputs will bring together academic, lay and design communities concerned with living disability and creating future technologies. We aim to be the first research team to bring these perspectives together to further understand the healthcare nexus they describe and to address the challenges for the future they outline.

Lay abstract: The media is full of stories asserting how technology is going to change our health futures. Developments in assistive technology design and production – from prosthetic limbs that duplicate the function of missing arms or legs, to smart drugs that will help preserve memory in old age, and companion robots that will serve as carers – promise huge benefits for improved health. Our project asks what ideas of body and personhood are at stake in these processes; how are hopes and fears about our bodies and minds expressed in the stories we tell ourselves about how we will interact with technology? In particular, we are interested in how this promise connects to the lives of people living with disabilities today. We will work with disability focus groups and family members, and develop prototype product designs and robot platforms, in exploring how we imagine future encounters between disability and technology.

Research activity codes: 8.1 ORGANISATION AND DELIVERY OF SERVICES
Health categories: MENTAL HEALTH;GENERIC HEALTH RELEVANCE
Title: The Advertisement of Gambling in Sport
Funder: Wellcome Trust

Abstract: Background: Ill-health has a multitude of causes; one being commercial products (West & Marteau, 2013). Some industries, including tobacco and alcohol, sell products that are harmful to public health, contributing significantly to the rise in non-communicable diseases (Kickbusch et al., 2016). An area much less researched, but no less important, is the gambling industry. In recent years, there has been an explosion of gambling marketing and advertising; particularly in the context of sport (Ireland et al. 2019). Public health experts are becoming concerned about the level of exposure to gambling advertising, particularly as there is inequity in the distribution of gambling-related harm (Goyder et al., 2020). Approach and Impact: My research will investigate the mechanisms of a policy that restricts gambling advertising in sport. I will do this firstly by studying the literature on gambling advertising and sport, and assessing the impact of current voluntary policies on exposure to advertising. I will then undertake two studies that seek to understand the relationship between gambling advertising and individual gambling behaviour, and how this may differ by gambling severity. My research will encourage a public health approach to gambling and will contribute to the small amount of literature in this area.


Research activity codes: 8.3 POLICY, ETHICS AND RESEARCH GOVERNANCE
Health categories: MENTAL HEALTH;GENERIC HEALTH RELEVANCE
Title: Assessing the prospective impacts of Universal Basic Income on anxiety and depression among 14-24-year-olds
Funder: Wellcome Trust

Abstract: In a context of austerity, pandemic and unemployment, 14- to 24-year-olds have above-average levels of anxiety, significant rates of depression and lower life satisfaction than previous cohorts. Building on our model of upstream socioeconomic pathways for health impact, this project examines prospective impact of Universal Basic Income, a system of unconditional cash transfers, on anxiety and depression among 14-24s. It brings together an established, multi-disciplinary team to: Objective 1) create a ‘risk’ factor for anxiety and depression among 14-24s from existing data O2) deploy the RSA’s Citizen Engagement Workshops and focus groups with disabled people to advance designs for a ‘transitional UBI’ for 14-17s, an overall scheme aimed specifically at mental health impact, and account for additional needs O3) use the ‘risk’ factor to model the impact of the cash transfer schemes from 2) on anxiety and depression among 14-24s O4) design research protocols to measure impacts in different schemes using the examples of ActEarly’s Bradford pilot and the RSA/Scottish Government’s prospective Dunfermline trial This will lead to a series of publications, an end of project report published by the RSA and a set of impact measurement research materials. We will seek to ‘leverage’ these to secure further funded research.


Research activity codes: 8.1 ORGANISATION AND DELIVERY OF SERVICES
Health categories: MENTAL HEALTH;GENERIC HEALTH RELEVANCE
Title: Sexual Violence, Medicine, and Psychiatry
Funder: Wellcome Trust

Abstract: Shameless! is a bold and exciting cross-arts festival intersecting academic research, activism and art in confronting sexual violence. A three year project with each edition of the festival hosted in the UK and Brazil; London 2021, Rio de Janeiro 2022, and sharing learning across the UK in 2023. Shameless! brings together diverse communities of survivors and the expertise of researchers, medical, psychiatric and legal professionals, artists and activists in a transformative programme of talks, performances, workshops, ‘how to’ clinics, wellness spaces, and a schools’ programme. A wide range of partners will be engaged in varying capacities. Our principal partner, The WOW Foundation (WOW), will co-produce the two festival editions in London and Rio de Janeiro. Given WOW’s robust experience and network, including in Brazil, Shameless! will implement WOW’s methodology in producing both festivals. Shameless! will also work with national, international and grassroots organisations and charities, and commission local artists and wellness practitioners to facilitate safe spaces for dialogue and healing. Offering a unique environment for children, families, young people, women, gender- and trans-diverse people, the festival will provide safeguarding measures to protect members from vulnerable and marginalised communities (race, class, abilities, sexualities and genders). In 2023 Shameless! will share our public engagement and festival programmes with UK universities through a series of workshops, conferences and publishing reflective articles. Shameless! aims to revolutionise conversations around sexual violence between survivors and professionals; burst open the constructed and inherited ideas of shame; and create an emboldening attitudinal shift from stigma to agency.


Research activity codes: 7.1 INDIVIDUAL CARE NEEDS
Health categories: MENTAL HEALTH;GENERIC HEALTH RELEVANCE
Title: Understanding ethnic variations in the prevalence and experience of food insecurity, and its interaction with mental health: A mixed-methods longitudinal research programme
Funder: Wellcome Trust

Abstract: This Fellowship will explore the intersection of contemporary marginality, ethnicity and mental health through an integrative mixed methods study of the prevalence, causes, and lived experience of food insecurity in the UK. The goals are to: • understand variations in the prevalence and socio-demographic correlates of food insecurity, and its interaction with mental health, among UK ethnic groups • understand how different ethnic groups conceptualise ‘food insecurity’ and how this shapes its interaction with their mental health • understand ethnic variations in the lived experience of food insecurity, including food bank use, and its interaction with mental health • theorise the nexus of marginality, ethnicity and health in post-industrial Britain • provide a platform for mixed-methods, longitudinal analyses of food insecurity. The Fellowship is composed of two interlinked studies, integrated within a new theoretical framework on contemporary marginality. Study 1 employs Qualitative Longitudinal Research methods (N=30) over two years to explore the experience of food insecurity, the contingent nature of ethnicity, and the interaction of food insecurity, ethnicity and mental health. Study 2 will estimate the prevalence, socio-demographic correlates and mental health causes and consequences of food insecurity and food bank use among UK ethnic groups, using existing and commissioned national and local survey data.

Lay abstract: There has been a sharp rise in food-bank use since 2010, suggesting increasing numbers of people without access to affordable, nutritious food (food insecurity). Research from north America shows food insecurity damages mental health and varies by ethnic group, but this has not been studied in the UK. I will investigate how food insecurity and its relationship with mental health varies among UK ethnic groups. I will explore this at a national level, using survey data, and by interviewing 30 food-bank clients from different ethnic groups on three occasions. I will combine survey and interview data in a new theory on insecurity and ethnicity in present-day UK. The research will improve understanding of the groups affected by food insecurity and poor mental health. It will help policy-makers develop policies to target food insecurity and mental health. In showing how clients access food-banks overtime, it will help NGOs provide long-term support.

Research activity codes: 1.2 PSYCHOLOGICAL AND SOCIOECONOMIC PROCESSES
Health categories: MENTAL HEALTH;GENERIC HEALTH RELEVANCE
Title: Capacity, consent and autonomy: health research participation for people with a learning disability
Funder: Wellcome Trust

Abstract: People with a learning disability have low rates of participation in health research. The acceptability of health interventions and medication are rarely tested on them in population based studies. This project examines 2 time points at which their participation in health research is subject to under-researched interactions and interpretations. It scrutinizes the operation of ideas of capacity, consent and autonomy at those time points. This study will use ethnographic and interview methods to examine the role of NHS research ethics committees in their discussions of studies, looking for the ways intellectual disability is conceptualised and how this influences research design and approval. It will utilize autoethnographic and interview methods to tease out how researchers negotiate the everyday ethics of implementing mental capacity guidance during research. Thirdly, it will work with people with a learning disability to gain their perspective on health research participation, consent and capacity. This project will generate innovative empirical data, ambitious theoretical engagement with concepts of capacity, consent and autonomy. I will also create practical guidance for ethical review committees, researchers, people with learning disabilities and the general public to challenge the lack of diversity in research samples and the inequality in research participation.

Lay abstract: Health research findings translate into the guidance given to Doctors and Nurses about what medicine to prescribe or care to give. People with a learning disability are often excluded from health research, based on assumptions about how well they can understand or take part in research. Yet they will receive medicine and treatments through mainstream services like everyone else. I will look at how research ethics committee's think and talk about people with a learning disability as participants in research. I’ll find out how researchers who recruit people into research understand situations where the person has a learning disability and I will speak to people with a learning disability to get their opinion on taking part in health research and the process of giving consent. I will work with people with learning disability to improve guidance for ethics panels, researchers and information about research for people with a learning disability.

Research activity codes: 8.3 POLICY, ETHICS AND RESEARCH GOVERNANCE
Health categories: MENTAL HEALTH;GENERIC HEALTH RELEVANCE