Living with and beyond cancer : a study to investigate what it is like to live with and beyond a 'poor prognostic' cancer in contemporary society

Abstract

In the UK, more than two million people are alive following a cancer diagnosis and people with cancer live an average six times longer than they did forty years ago. There have been dramatic survival improvements in some cancers with six now having median survival expectations of over ten years. This is remarkable but cancer consists of more than two hundred ‘types’ and, for some types, predicted survival is still only weeks. Furthermore, some issues related to long term survival are only just emerging, many remain underresearched and studies that exist have been criticised for being drawn from limited cancer sites and ignoring the coping strategies and social contexts of those diagnosed with cancer. The aim of this work is to explore the experience of living with and beyond the diagnosis of a ‘poor prognostic’ cancer in contemporary society and from a sociological perspective. The work is informed by a literature review which explores lay understanding of cancer, a theoretically driven investigation designed to produce a sociological understanding of what it is like to live with cancer, a feasibility study and a full empirical study, which were both supported by users. Data for the principal study was generated by ‘photovoice’; a novel participatory method in which participants created and discussed photographs to illustrate and describe their experience in depth. This study revealed that living with and beyond cancer was an ongoing disruptive experience for participants and their constant fear of recurrence impacted on future plans. Furthermore, society’s stigmatising perception of cancer bestowed certain responsibilities and obligations on the participants. Photographs added a power and richness to the data. This work adds to the very limited understanding of the experience of cancer and ‘survivorship’ for this group and will hopefully guide appropriate communication, service provision and future research