BACKGROUND: A diagnosis of cancer and anticipated death of a loved one has a significant impact on the whole family. Research has mainly focused on carers, with little emphasis on the wider, long-term implications.
AIM: To explore the cancer beliefs of patients with advanced cancer and their relatives. The focus was on their lived experiences and how these affected their beliefs, attitudes and constructions of cancer risk.
METHODS: 27 in-depth, semi-structured interviews were conducted with advanced breast, colorectal or lung cancer patients and their close relatives. Interviews were recorded and transcribed verbatim. Data was analysed using the constant comparison method.
RESULTS: A core category of fear, helplessness and fatalism emerged from the data. Family history was the most salient cancer risk factor and a diagnosis of advanced cancer increased perceptions of vulnerability for first-degree relatives. For relatives, the uncertainty and chaotic loss of control that accompanied an advanced cancer diagnosis resulted in multiple levels of fear and intensely negative or fatalistic attitudes to cancer. In contrast, patients held less negative views of cancer. They described several means of regaining control, including the importance of leaving a legacy - the hope that their situation would have a positive impact on others in the future.
CONCLUSION: Despite the prominence of 'prevention' in definitions of palliative care, services have evolved that are largely professional led and reactive. Adopting a health promoting approach based on empowerment is important, not just for improving care, but also increasing perceptions of control that may reduce negative cancer beliefs.