Understanding priorities of care: An assessment of FAMCARE-2 satisfaction surveys and thematic analysis in community palliative care

Abstract

Background The palliative care sector currently faces cumulative challenges and finite resources to meet population needs. To optimise the effectiveness and efficiency of palliative care services, it is necessary to understand care needs and aspects prioritised by patients and families. Deepening our understanding of their experience and preferences will direct the sector’s limited resources toward achieving optimal care in the place of choice. Aim To assesses patient and carer satisfaction of a community palliative care service and to identify common themes that impact the experience of care, and the aspects of care that are important to them. Method A single-centre, prospective study exploring patient and carer satisfaction of two cohorts (patients receiving standard palliative care, or additional and intensive care support) via the Bupa Palliative Care Choices (BPCC) programme. A tool specifically designed to measure satisfaction with palliative care was utilised. Survey comments in the BPCC cohort were analysed thematically. Results Survey response rate was 35% and satisfaction results across all domains were high in both cohorts (very satisfied/satisfied >90%). Thematic analysis of comments identified priorities of care being emotional support for the patient and family, availability of the palliative care team, a focus on patient dignity, and provision of information relating to the patient’s condition and illness trajectory. Conclusion This study provides insights into patient and family priorities of care and identifies areas of need as emotional support, availability of and access to 24-hour care, respecting patient’s dignity, and transparent discussions regarding the patient’s condition and illness trajectory.