Family carers' experiences of serious illness conversations in haematological malignancies - a qualitative interview study.

backgroundFamily carers of cancer patients commonly experience anxiety, as well as grief. To better manage their situation, they seek to understand the disease process and become involved in decision-making. Early integration of palliative care and serious illness conversations have been shown to improve quality of life, reduce symptom burden, and support both patients and their families. In haematological malignancies, patients often experience high disease burden, poor quality of life, and aggressive treatment near the end of life, with end-of-life discussions frequently occurring too late. This may impact on the experience of their family carers. The aim of this study was to explore family carers' experiences of communication about serious illness and palliative care in the context of haematological malignancies.

methodThis study has a qualitative descriptive design. Family members of patients who had died with haematological malignancy, treated at a University Hospital in Sweden, were invited to participate. A total of 9 family carers were interviewed between May 2023 and October 2024.

resultsThree main themes were identified in the experiences of the interviewed family carers: (1) Feeling excluded but still responsible, (2) Having time to prepare, and (3) Talking about difficult things.

conclusionsThe study shows that family carers of patients with haematological malignancies shoulder great responsibilities while simultaneously often feeling excluded from important conversations. The study highlights the need to include family carers and introduce conversations about palliative care early on, in order to provide support and facilitate communication between patient and family.