Studying local developments in cancer and palliative care services – by Sara Denver

I recently successfully defended my PhD thesis at the University of Glasgow. This post is about my study in the palliative care field, and reflects upon my experience as a researcher in the School of Interdisciplinary Studies/Institute of Health and Wellbeing. I undertook my PhD as a part-time student whilst practising as a solicitor in the field of medical law. My interest in cancer and palliative care issues stemmed from past professional encounters and the experience of close personal loss. The purpose of my study was to explore how cancer and palliative care services developed in one place and changed in the course of time. I wanted to increase our understanding of how this important area of care evolved in one context, in a context where the local dimension is often lost in wider narratives about national development.

Questions and methods

A small number of researchers have provided accounts of hospice developments nationally, but they do not explore individual experiences and the micro context in detail. Other studies have examined accounts of developing local cancer support services, but not hospice developments. My research addressed the question – how were cancer and palliative care services developed in one place – Lancaster – in the period from the mid-1970s to the end of 2000? Oral history and documentary sources were used to generate data, which was analysed using thematic analysis/constant comparison. Social constructionism offered a fruitful theoretical basis that increased understandings of the oral history accounts. A snowball sample recruited a broad group of participants that had been involved with the local cancer and palliative care services in the relevant period. Thirty five interviews were conducted.

Findings

The study revealed that services developed in the absence of national planning guidance and policy. Participants worked to make their approach respectable, but there was tension at times between the different groups. Progress was shaped by a combination of individual and social factors. Cancer support and palliative care evolved outside the National Health Service, yet alongside oncology. The resulting services were therefore ‘tripartite’ in character.

Many participants were involved in all three of the relevant local services; they created networks and collaborated to form comprehensive facilities, which were available from diagnosis to the terminal stage of illness. The approaches complemented each other. Initially very flexible in character, in time they became more structured, as social, historical, economic, professional and political mechanisms in the broader context impacted to shape them. This created some challenges for those involved.

The study also uncovered aspects of the meaning of compassion. It revealed that the compassionate practices of local innovators challenged mechanistic, conventional approaches and as a result, the people I interviewed often described how they had found new and different ways of providing care. All of these findings help us to better understand the development of cancer and palliative care services in a local context – and the key ingredient of local passion and commitment.  How can such elements be fostered today – building on the experience of these early pioneers – in new and changing policy contexts?

The PhD experience

During my PhD studies there were many opportunities to attend conferences, workshops, seminars, symposia and research meetings in order to learn more about and to network with others interested in palliative and end of life care. I became a member of the Research Network at the International Observatory on End of Life Care at Lancaster University. I joined the Oral History Society and generated links with organisations such as Help the Hospices, St John’s Hospice, CancerCare and the Dying Matters Coalition. I was encouraged by my supervisors (Professor David Clark and Professor Nicholas Watson at the University of Glasgow) and other colleagues to present papers at postgraduate research symposia and seminars and these took place at some wonderful locations.

In summary, during the past five years I have experienced some of the most interesting, challenging and busiest times of my life. It was incredibly exciting to be involved in generating new knowledge that has increased our understanding of a subject that I feel very passionate about, and I am looking forward to continuing to contribute to this area in the future. It is an exciting time to get involved with advocacy groups that aim to improve standards through the provision of compassionate end of life care.

Sara Denver is a Solicitor in the medical law team at Simpson Millar Solicitors in Leeds. Sara is also a Registered General Nurse with a background in oncology and trained as a cardiothoracic intensive care nurse at the Royal Brompton National Heart and Lung Hospital and London Chest Hospital.

Denver, S. J. (2014). Experiences of developing cancer and palliative care services in one community in North West England 1976-2000: An oral history and documentary reconstruction. PhD Thesis. University of Glasgow.