European Association of Palliative Care White Paper on research priorities for family caregiving in palliative care: A systematic review of reviews

Abstract

BACKGROUND: Family carers are central to providing high quality palliative care. However, gaps remain in our understanding of how best to support carers. In 2010, the European Association for Palliative Care published a White Paper on 'Improving Support for Family Caregivers'. The White Paper informed the research agenda in family caregiving, but requires updating due to recent advances in research and practice. AIM: To update the White Paper from 2010 and undertake a systematic review of reviews to identify key priorities for research into family caregiving in palliative care. DESIGN: A systematic review of reviews (PROSPERO registration: 2024 CRD42024591671). DATA SOURCES: Web of Science, Scopus, CINAHL, ASSIA, Medline Ovid, APA PsychInfo and the Cochrane Database were searched from January 2010 to September 2025. Articles were included if they presented research priorities or recommendations relating to family caregiving in palliative care. The Critical Appraisal Skills Programme checklist was used to appraise the quality of included reviews. RESULTS: The database searches returned 823 references, after screening 30 reviews were included. Four main areas of priority for future research were identified: improving methods and methodologies; carer centred research priorities; health systems research priorities; and research focused on carer roles and integration within healthcare teams. CONCLUSIONS: This review highlights research priorities for family caregiving in palliative care. Significant gaps remain in our understanding of how best to support carers, and innovative research methods are required to better understand and evaluate diverse carer experiences in the context of expanding demand for unpaid care globally.