Cancer caregivers’ experiences of prognosis in Australia: a qualitative interview study

Delivering news about the likely course of an illness is a central and often difficult part of cancer care. Much of research focuses on patients’ experiences of becoming aware of their prognosis – the expected development of a disease. However, in addition to patients and health professionals, caregivers are the unseen third party of prognostic communication. Yet, less attention is paid to the perspectives and experiences of caregivers. To address this, this study conducted interviews with caregivers in Australia to explore topics such as; everyday practices and experiences of caring for a person living with cancer, and dynamics between caregivers and patients. The results identified four main themes; caregivers’ uncertainty around the meaning and implications of diagnosis; caregivers’ sense of exclusion in prognostic conversations; the practice of situating prognosis within the context of home; and the precarious balance between realism, optimism and strategic “ignorance”. Developing a better understanding of caregivers’ perceptions of prognosis could facilitate greater participation by caregivers in prognostic conversations and address complexities to improve experiences of all individuals involved in cancer care.

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