Family Carer Experiences of Diagnosis, Advancing Illness, Death, and Bereavement: A Qualitative Analysis

Background: The diagnosis of a life-threatening illness precipitates a chain of events as the family member witnesses the advancing illness, the death of their relative, and is then bereaved. Cross-sectional studies of carers at different stages in this progression are common, but literature examining the carer journey from diagnosis of a life limiting illness to bereavement is rare. Aim: To explore family carers’ experiences of this trajectory, and their dynamic needs and expectations. Method: Secondary analysis of final interview data from five longitudinal and multi-perspective studies. The data were from in-depth qualitative interviews with bereaved carers of patients with malignant and non-malignant diseases in Scotland. A sample of the final, reflective bereavement interviews from these studies was selected and analysed using an inductive, thematic approach. Results: 15 interviews were examined. Four key times in the caring trajectory were identified: diagnosis, illness progression, end of life, and bereavement. Each had its own challenges and support needs, as the carers faced differing levels of burden. Carers experienced increasing levels of responsibility, and their needs included adequate information, accessing suitable support and feeling valued by the healthcare team. Their experiences of end-of-life care directly affected their bereavement, when some struggled with existential issues and regret. Conclusion: These carers wanted to be equal partners in the care of the patient and needed access to adequate support and help to prepare for the death. Many would benefit from encouragement to maintain their own quality of life minimising feelings of lack of purpose in bereavement. Dissatisfaction in the bereavement period revolved around lack of information and perceived poor care whilst the patient was unwell. Many clinicians struggle to know how to best support family carers through the course of the patient’s illness and into bereavement. Knowing likely patterns and causes of distress at different stages can help clinicians minimise avoidable distress at every stage.