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1. Volunteers in end-of-life care : how is their role constructed?

Author

France, Rachel

Subjects
362.17
Abstract

This thesis explores the everyday world of hospice volunteers in two UK adult hospices using an ethnographic approach combining participant observation, ‘extended conversations’ with staff and analysis of hospice documents. I aimed to uncover how the hospice volunteer role was constructed drawing on data from volunteers in three care settings: day hospice, inpatient and bereavement. The thesis employs Hockey’s (1990) conceptualisation of the hospice ‘journey’ as a ‘biological continuum’ – from living to dying, to death and (for bereaved relatives) back to life – to illuminate how the construction of the volunteer role depends on the proximity to the life death boundary of the patient/client in these settings. Following Ganesh and McAllum’s (2012) proposition that ‘volunteer’ and ‘professional’ are constructed in tension with each other, I argue that death and dying is professionalised terrain in which, volunteers as un-professional and thus potentially ‘threatening’, are problematic. Drawing on Douglas (1966/2002), I suggest that volunteers may be ‘matter out of place’ (p.203) and that volunteering could be incommensurable with the medical model. The thesis distinguishes volunteers in ‘general’ roles (serving meals and drinks, washing up and socialising with patients) from those offering skills for which professional training is required, mostly complementary therapists and care assistants. It shows how the roles of the former are ‘bounded’ to keep them away from death and dying, while the latter are the subject of more direct strategies to treat them as either anomalous or ambiguous. Relegating volunteers, particularly those in the inpatient unit, to the periphery of hospice care regardless of the skills they offer contrasts with hospice ideology that volunteers are an integral part of the non-hierarchical multi-disciplinary team. This thesis has helped to reveal the extent to which this is the case.

Published
2020
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3. Professional knowledge and research-informed practice: Time for a rethink?

Author

MOSS, GEMMA and FRANCE, RACHEL

Abstract

The article offers information on the integration of research evidence and professional knowledge in education. It exploring the challenges and potential improvements in research-informed practice; discusses the emphasis on evidence-based practice in England, United Kingdom; challenges related to the effectiveness of randomized controlled trials (RCTs) in education; and the importance of considering how research evidence is used in practice alongside what the evidence says.

Published
2023

4. Basic income experiments in OECD countries:A rapid evidence review

Author

Chrisp, Joe, Smyth, Laura, Stansfield, Claire, Pearce, Nick, France, Rachel, and Taylor, Chris

Abstract

Since 2015, the idea of a universal basic income (UBI) has inspired an increasing number ofexperiments in OECD countries. In this report, we provide a rapid evidence review of thecharacteristics, indicators and outcomes of these basic income experiments in order to informpolicymakers about gaps in knowledge and to make suggestions for future experimental design.We found 38 experiments across Europe, North America and Asia that met inclusion criteria.Most experiments involve cash benefits targeted at a relatively small number of low-incomehouseholds for a period of roughly two years dispersed across a relatively large area. We consider thatthis makes a sound case for the development of more heterogenous target groups, a longer time periodand a greater examination of community effects. We also provide some suggestions for more policy-and political-oriented goals, which we argue are an oft-ignored elements of these experiments inpolicymaking and research.

Published
2022

5. Basic income experiments in OECD countries: A rapid evidence review

Author

Chrisp, Joe, Smyth, Laura, Stansfield, Claire, Pearce, Nick, France, Rachel, and Taylor, Chris

Abstract

Since 2015, the idea of a universal basic income (UBI) has inspired an increasing number of experiments in OECD countries. In this report, we provide a rapid evidence review of the characteristics, indicators and outcomes of these basic income experiments in order to inform policymakers about gaps in knowledge and to make suggestions for future experimental design. We found 38 experiments across Europe, North America and Asia that met inclusion criteria. Most experiments involve cash benefits targeted at a relatively small number of low-income households for a period of roughly two years dispersed across a relatively large area. We consider that this makes a sound case for the development of more heterogenous target groups, a longer time period and a greater examination of community effects. We also provide some suggestions for more policy- and political-oriented goals, which we argue are oft-ignored elements of these experiments in policymaking and research.

Published
2022
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7. A Century of Plays by American Women.

Author

France, Rachel and France, Rachel

Abstract

Chosen for their literary quality and because they reflect the historical periods in which they were written, the 23 one-act dramas in this anthology represent the work of American female playwrights. The plays range from the realistic dramas produced in the "Little Theatres" of New York City at the turn of the century to current off-Broadway political plays that demonstrate the influence of the women's movement. The plays represent the work of 25 authors including Rachel Crothers, Susan Glaspell, Edna Ferber, Sada Cowan, Gertrude Stein, Marjean Perry, Rosalyn Drexler, and Clare Boothe Luce. Each drama is preceded by a brief biography of the author, and a list of supplemental readings is appended. (MAI)

Published
1979

10. Volunteers in End-of-Life Care: How is their Role Constructed?

Author

France, Rachel and France, Rachel

Abstract

This thesis explores the everyday world of hospice volunteers in two UK adult hospices using an ethnographic approach combining participant observation, ‘extended conversations’ with staff and analysis of hospice documents. I aimed to uncover how the hospice volunteer role was constructed drawing on data from volunteers in three care settings: day hospice, inpatient and bereavement. The thesis employs Hockey’s (1990) conceptualisation of the hospice ‘journey’ as a ‘biological continuum’ – from living to dying, to death and (for bereaved relatives) back to life – to illuminate how the construction of the volunteer role depends on the proximity to the life death boundary of the patient/client in these settings. Following Ganesh and McAllum’s (2012) proposition that ‘volunteer’ and ‘professional’ are constructed in tension with each other, I argue that death and dying is professionalised terrain in which, volunteers as un-professional and thus potentially ‘threatening’, are problematic. Drawing on Douglas (1966/2002), I suggest that volunteers may be ‘matter out of place’ (p.203) and that volunteering could be incommensurable with the medical model. The thesis distinguishes volunteers in ‘general’ roles (serving meals and drinks, washing up and socialising with patients) from those offering skills for which professional training is required, mostly complementary therapists and care assistants. It shows how the roles of the former are ‘bounded’ to keep them away from death and dying, while the latter are the subject of more direct strategies to treat them as either anomalous or ambiguous. Relegating volunteers, particularly those in the inpatient unit, to the periphery of hospice care regardless of the skills they offer contrasts with hospice ideology that volunteers are an integral part of the non-hierarchical multi-disciplinary team. This thesis has helped to reveal the extent to which this is the case.

11. Volunteers in End-of-Life Care: How is their Role Constructed?

Author

France, Rachel and France, Rachel

Abstract

This thesis explores the everyday world of hospice volunteers in two UK adult hospices using an ethnographic approach combining participant observation, ‘extended conversations’ with staff and analysis of hospice documents. I aimed to uncover how the hospice volunteer role was constructed drawing on data from volunteers in three care settings: day hospice, inpatient and bereavement. The thesis employs Hockey’s (1990) conceptualisation of the hospice ‘journey’ as a ‘biological continuum’ – from living to dying, to death and (for bereaved relatives) back to life – to illuminate how the construction of the volunteer role depends on the proximity to the life death boundary of the patient/client in these settings. Following Ganesh and McAllum’s (2012) proposition that ‘volunteer’ and ‘professional’ are constructed in tension with each other, I argue that death and dying is professionalised terrain in which, volunteers as un-professional and thus potentially ‘threatening’, are problematic. Drawing on Douglas (1966/2002), I suggest that volunteers may be ‘matter out of place’ (p.203) and that volunteering could be incommensurable with the medical model. The thesis distinguishes volunteers in ‘general’ roles (serving meals and drinks, washing up and socialising with patients) from those offering skills for which professional training is required, mostly complementary therapists and care assistants. It shows how the roles of the former are ‘bounded’ to keep them away from death and dying, while the latter are the subject of more direct strategies to treat them as either anomalous or ambiguous. Relegating volunteers, particularly those in the inpatient unit, to the periphery of hospice care regardless of the skills they offer contrasts with hospice ideology that volunteers are an integral part of the non-hierarchical multi-disciplinary team. This thesis has helped to reveal the extent to which this is the case.

12. 18 Constructing the hospice volunteer role: emerging findings from an ethnographic exploration

Author

France, Rachel

Abstract

IntroductionThe modern hospice movement in western societies has involved volunteers since its inception. With the increasing demand for end-of-life and palliative care, there is likely to be a corresponding increased demand for volunteers, who have been estimated to reduce hospice costs by 23 per cent (Help the Hospices, 2006). However, palliative and end-of-life care has tended to follow a medical model in western societies, which has placed the role of the volunteer outside the boundary of professional care.AimsTo explore the role of patient-facing volunteers in adult end-of-life care.MethodsParticipant observation in two UK adult hospices, extended conversations with participants, analysis of relevant hospice documents.FindingsThe role is constructed by boundaries, including clinical and professional, but always within the framework of the boundary between life and death. My data showed that while the role is seen as distinct and separate from that of paid staff, the volunteer role was sometimes difficult to negotiate. How this played out demonstrated how the hospice constructed the volunteer role, but also how the hospice constructed death and dying.ConclusionsMy findings highlight what is happening in a clinical setting through the lens of a ‘neglected’ group of workers, and I will offer recommendations to improve current practice. Ethnography offers in-depth data to present the reality of the volunteer role that will have relevance to policy and practice.Reference. Help the Hospices: Volunteer value: A pilot survey of UK hospices. London: Help the Hospices 2006.

Published
2017
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14. Von Hippel-Lindau Disease: Genetics and Role of Genetic Counseling in a Multiple Neoplasia Syndrome.

Author

Nielsen SM, Rhodes L, Blanco I, Chung WK, Eng C, Maher ER, Richard S, and Giles RH

Subjects
Genetic Testing, Humans, Mutation, Von Hippel-Lindau Tumor Suppressor Protein genetics, von Hippel-Lindau Disease psychology, Genetic Counseling, von Hippel-Lindau Disease genetics
Abstract

Von Hippel-Lindau disease (VHL) is one of the most common inherited neoplasia syndromes and is characterized by highly vascular tumors of the eyes, brain, and spine, as well as benign and malignant tumors and/or cysts of the kidneys, adrenal medullae and sympathetic paraganglia, endolymphatic sac, epididymis, and broad ligament. Since the discovery of the VHL gene in 1993, more than 900 families with VHL have been identified and examined. Genetic testing for VHL is widely available and will detect a disease-causing mutation in rate 95% to 100% of individuals who have a clinical diagnosis of VHL, making it the standard of care for diagnosis of VHL. Furthermore, genetic testing for VHL is indicated in some individuals with seemingly sporadic VHL-related tumor types, as ≤ 10% of pheochromocytoma or early-onset renal cell carcinoma and ≤ 40% of CNS hemangioblastoma harbor germline VHL mutations without a family history or additional features of VHL disease. The majority of VHL mutations are private, but there are also well-characterized founder mutations. VHL is a complex, multiorgan disease that spans the breadth of oncology subspecialties, and, as such, providers in these subspecialties should be aware of when to consider a diagnosis of VHL, when to refer a patient to a genetics specialist for consideration of gene testing, and, perhaps most importantly, how to communicate this sensitive information in an age-appropriate manner to at-risk families. This review will provide state-of-the-art information regarding the genetics of VHL and will serve as a key reference for nongenetics professionals who encounter patients with VHL., (© 2016 by American Society of Clinical Oncology.)

Published
2016
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15. t(14;18) Translocation: A predictive blood biomarker for follicular lymphoma.

Author

Roulland S, Kelly RS, Morgado E, Sungalee S, Solal-Celigny P, Colombat P, Jouve N, Palli D, Pala V, Tumino R, Panico S, Sacerdote C, Quirós JR, Gonzáles CA, Sánchez MJ, Dorronsoro M, Navarro C, Barricarte A, Tjønneland A, Olsen A, Overvad K, Canzian F, Kaaks R, Boeing H, Drogan D, Nieters A, Clavel-Chapelon F, Trichopoulou A, Trichopoulos D, Lagiou P, Bueno-de-Mesquita HB, Peeters PH, Vermeulen R, Hallmans G, Melin B, Borgquist S, Carlson J, Lund E, Weiderpass E, Khaw KT, Wareham N, Key TJ, Travis RC, Ferrari P, Romieu I, Riboli E, Salles G, Vineis P, and Nadel B

Subjects
Adult, Aged, Case-Control Studies, Cohort Studies, Europe epidemiology, Female, Humans, Lymphoma, Follicular epidemiology, Male, Middle Aged, Molecular Epidemiology, Polymerase Chain Reaction methods, Prevalence, Biomarkers, Tumor blood, Biomarkers, Tumor genetics, Chromosomes, Human, Pair 14, Chromosomes, Human, Pair 18, Lymphoma, Follicular blood, Lymphoma, Follicular genetics, Translocation, Genetic
Abstract

Purpose: The (14;18) translocation constitutes both a genetic hallmark and critical early event in the natural history of follicular lymphoma (FL). However, t(14;18) is also detectable in the blood of otherwise healthy persons, and its relationship with progression to disease remains unclear. Here we sought to determine whether t(14;18)-positive cells in healthy individuals represent tumor precursors and whether their detection could be used as an early predictor for FL., Participants and Methods: Among 520,000 healthy participants enrolled onto the EPIC (European Prospective Investigation Into Cancer and Nutrition) cohort, we identified 100 who developed FL 2 to 161 months after enrollment. Prediagnostic blood from these and 218 controls were screened for t(14;18) using sensitive polymerase chain reaction-based assays. Results were subsequently validated in an independent cohort (65 case participants; 128 controls). Clonal relationships between t(14;18) cells and FL were also assessed by molecular backtracking of paired prediagnostic blood and tumor samples., Results: Clonal analysis of t(14;18) junctions in paired prediagnostic blood versus tumor samples demonstrated that progression to FL occurred from t(14;18)-positive committed precursors. Furthermore, healthy participants at enrollment who developed FL up to 15 years later showed a markedly higher t(14;18) prevalence and frequency than controls (P < .001). Altogether, we estimated a 23-fold higher risk of subsequent FL in blood samples associated with a frequency > 10(-4) (odds ratio, 23.17; 95% CI, 9.98 to 67.31; P < .001). Remarkably, risk estimates remained high and significant up to 15 years before diagnosis., Conclusion: High t(14;18) frequency in blood from healthy individuals defines the first predictive biomarker for FL, effective years before diagnosis.

Published
2014
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