Title: Suffering in Relation: Hidden Hospice Work
Funder: Economic and Social Research Council

Abstract: Academic Impact: Submit 3 articles to establish myself as a scholar in: sociology, sociology of work and death and dying. 1. 'Hidden Hospice Workers: Silence, Touch and Food Work', Sociology (November 2022). 2. 'Managing Emotions and Managing Time: The Balancing Acts of Hospice Work', Work, Employment and Society (March 2023). 3. ''Sometimes, there is nothing else to give': Relational Suffering in Hospice Work', Palliative Medicine (July 2023). Present at: the British Sociological Association conference (April 2023) and the European Sociological Association conference (August 2023). Write a piece for The Conversation based on Paper 1 (January 2023) and a methodological piece for The Sociological Review Magazine (April 2023). Collaborative Engagement for Non-Academic Impact: 1. Consultation workshop with medical and non-medical staff at St Leonard's Hospice, York (November 2022). This will open dialogue between occupational groups and raise an agenda around the emotional practices and support needs of staff. Attendees will develop a set of recommendations on emotional support for staff. Existing connections with the hospice, and experience of consultation work will be drawn upon. 2. Create a resource from PhD findings and consultation work (resource completed by April 2023) comprising of a booklet and short video illustrating everyday and emotional experiences of hospice staff as well as recommendations for staff support. 3. Hospice UK workshop to launch and share the resource (held in June 2023). Drawing on connections established with Hospice UK, the main UK charity supporting the UK's 210 hospices, we will organise a half-day event where I will present and launch the resource. It will also be circulated at their quarterly Heads of Care training days. 4. Collaborate with the Point of Care Foundation to arrange an online seminar (held in September 2023). PoCF is a national training and professional support organisation for healthcare staff. The event will be crucial in sharing PhD findings and outputs with a healthcare and public audience and extend discussion on hidden care in different workforces. New Research: Conduct pilot research (December/January) building on PhD findings to support development of a grant. A marginal focus of my PhD included the relationships non-medical staff develop with patients and families, often using subtle, sensory forms of care. I found that these staff (e.g., cooks, complementary and occupational therapists, cleaners, care assistants) offered unique social and emotional care to patients and families. In the fellowship, I will conduct two focus groups with non-medical hospice and hospital staff to extend the focus of my work. Development of ESRC grant: Develop and submit an ESRC New Investigator application: 'Hidden Work(ers) in Healthcare: Sensory Forms of Care' (July 2023). Made essential by its timeliness, it will explore sensory care carried out by non-medical workers (listed above, in addition: porters and receptionists) such as physical touch, food work, and non-verbal interactions. These forms of care are subtle, ill-researched and often not acknowledged. This falls at a pivotal time as where public understanding regarding what we class as care and 'key work' is shifting after the pandemic. The pandemic also raises new questions about the significance of sensory care, especially in the presence of PPE and rules on hygiene. The study would contribute to conceptual, public and policy understandings of what constitutes 'care' and the forms it adopts. Professional Development: 1. Attend UoY's Research Excellence Training events: 'Preparing for Fellowship Success', 'Grant writing', 'Public Engagement', 'Writing for the Conversation'; and SRA/NCRM training on creative and sensory methods. 2. Extend connections at UoY: Death and Culture Network, Wolfson Palliative Care Research Centre and Materialities of Care network.

Lay abstract: Hospices are grounded in providing care and support to people reaching the end of life, as well as to their families and loved ones. We know that such care is pivotal in relieving physical symptoms, emotional pain, and distress. As such, those working in hospices are intimately involved, either in fleeting moments of crisis or through prolonged periods, in illness, pain, and suffering. Hospice workers are therefore routinely exposed to physical and emotional suffering, as well as death, in their everyday work. There is a lack of research that focuses on how hospice workers cope, the types of emotions they feel, and how they experience relationships with patients and families. My PhD research placed the experiences and accounts of those providing end-of-life care at the centre of its focus. The findings extend our understanding about who provides care. It explores day-to-day work in a hospice for the whole range of workers there, from doctors and nurses to care assistants, cleaners, housekeepers, cooks, and therapists. In the fellowship, I will offer a unique contribution by illuminating the experiences of non-medical staff. Their important accounts will sit alongside that of their medical counterparts. This sector of the workforce is currently overlooked, both within academia and public understanding. This research shifts understandings of who provides care, and the forms that this adopts. In this fellowship, I will share findings and further this research agenda. My findings offer insights to moments of care that engage with the different senses: the touch of a housekeeper's hand on a patient's arm as they mop the floors, the careful preparation of a sausage sandwich as a patient's requested 'final' meal, and the use of essential oils to ease a patient's physical and emotional pain. As relationships often alter and fade towards the end of life, hospice workers are nearby figures of support. In the findings that will be shared during the fellowship, I argue that hospice workers, in all their different roles, sometimes suffer with and alongside patients and their families. The research reveals the reciprocal and relational suffering that unfolds in hospice work, as well as the enjoyment the staff gain from their close relationships and bonds with those they meet. These findings are important for hospice staff, patients, healthcare organisations, as well as for all of us, as they tell us about the provision of care at the end of life, and the needs of those that care for us. My PhD findings advance understandings about how those who care for us at the margins of life need emotional support to continue to give support to patients and families. This comes at a time where healthcare systems are increasingly stretched and as death tolls have been thrust into our daily lives through the pandemic. The fellowship builds on the PhD research by sharing the everyday experiences of hospice workers, which were gathered through six months of observations and eighteen in-depth interviews. I will contribute original findings to academic audiences through journal articles and blogs. I will also conduct consultation work with hospice staff to further understand their work and support needs, and, in collaboration with Hospice UK (which has 210 member organisations), communicate this work and PhD findings to initiate national change in how hospice staff are supported in doing their work. Sharing their voices through a video and booklet, the fellowship will emphasise the hidden work of the overlooked non-medical workforce. The training and support needs of this group are particularly neglected, and I will begin to address how they are perceived as providers of care, ensuring recognition for this group. I will develop a research agenda drawing on emergent findings from the PhD to focus specifically on hidden groups of non-medical staff in different sectors to broaden the focus.

Research activity codes: 7.2 END OF LIFE CARE
Health categories: GENERIC HEALTH RELEVANCE