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How does contemporary health care meet the needs of those living with a poor, prognostic cancer and does it need improving?

Dr Claire Balmer was awarded a West Midlands Strategic Health Authority (now NHS West Midlands) Nurses’, Midwives’ and Allied Health Professionals’ Research Training Fellowship in 2009. This funded her PhD: an investigation into whether contemporary health care meets the needs of those living with a poor, prognostic cancer.

A significant part of the PhD was an empirical study investigating what it is like to live with a diagnosis of a poor, prognostic cancer in a society that celebrates survival. Average survival after a cancer diagnosis has risen from one to 5.8 years in the last thirty-five years and the most common UK cancer, breast cancer, now has a five-year survival of 82 per cent. However, there are many ‘types’ of cancer, each with a unique portfolio of causes, symptoms, treatments and outcomes. Increased survival is not universal throughout the cancer spectrum and the majority of cancers still have a poor prognosis (ie a likely survival of less than five years).

Thirty adult participants who had treatment for a variety of such ‘poor, prognostic’ cancers were recruited nationally. Data about the experience of living with and after cancer was gathered via ‘photovoice’. Photovoice is a novel research method which allows the communication of experience through participant-produced photographs and interviews. It has the potential to ‘dig deeper’ by offering participants another way of expressing aspects of life that may be difficult to put into words. It also allows researchers access to participants’ homes, workplaces and social events. It is firmly rooted in the concept of ‘participation’ as participants have control of their own data and can choose when they produce it and how they share it. So far it has been used successfully in other areas of health and social research and tentatively in cancer research.

The study data produced is currently being analysed. Early but consistent themes are being identified. This study should provide much needed, in-depth information for professionals and policy-makers on the meaning of cancer for those with a likely limited survival.