Experiences of developing cancer and palliative care services in one community in North West England 1976-2000: an oral history and documentary reconstruction

[摘要] The purpose of this study was to explore how cancer and palliative care services developed in one place and changed in the course of time. Research on how local cancer and palliative care services have developed is limited. A small number of researchers have provided accounts of hospice developments nationally, but they did 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. This research addresses the question - how were cancer and palliative care services developed in Lancaster 1976 ? 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 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.The study revealed that services developed in the absence of national planning; participants worked to make them respectable, but there was tension at times. Progress was shaped by a combination of individual and social factors. Services evolved outside the National Health Service, yet alongside oncology and were therefore tripartite in character. Elsewhere developments were often fragmented. Many participants were involved in all the 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 to reveal that at the macro level services were initially flexible. 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. The study also uncovered aspects of the meaning of compassion. It revealed that compassionate practices challenged the rationality of conventional approaches and shared relativist perspectives because participants found different ways of providing care. All of these findings contributed to new knowledge about the development of local cancer and palliative care services. The study was limited by the historical period, perhaps by the place and because the reconstruction was one interpretation. It is possible there are others.

[发布机构] University:University of Glasgow;Department:Institute of Health and Wellbeing

[关键词] cancer, palliative care, end of life care, compassionate care, oral history, tripartite services