The new EAPC White Paper on research priorities for family caregiving in palliative care has recently published in Palliative Medicine. In 2010, an EAPC Taskforce on Family Carers published a White Paper on ‘Improving Support for Family Caregivers in Palliative care’.
This White Paper was influential in informing the research agenda in family caregiving and subsequently the EAPC established a permanent Reference Group for Family Caregiving in Palliative Care. This group now works to promote the development of high-quality international research on caring.
Since 2010, research on family caregiving and palliative care has grown and the context of caring has changed. Family structures have evolved and increased migration means care relationships have had to adapt. Consequently the 2010 White Paper required updating and the EAPC Reference Group for Family Carers committed to producing a new White Paper to provide a comprehensive overview of the key priorities for research into family caregiving in palliative care.
In 2025-26, a systematic review of reviews was conducted to identify key priorities for research into family caregiving in palliative care. Following a robust and rigorous process of database searches, screening and data extraction four main areas of priority for future research were identified and included within the new White Paper:
- Improving methods and methodologies: Multiple priorities addressing methodological aspects of research were noted. The overall quality and conduct of research needs improving to produce more robust, reliable and generalisable findings. An important limitation of much existing research is a lack of diversity within research populations. More inclusive research designs need to be developed which specifically recruit from under-represented groups including ethnic, cultural and religious minorities and socio-economically disadvantaged. A particular gap was noted in low- and middle-income countries (LMICs) where carer research is under-represented.
- Carer centred research priorities: Particular groups of carers are underserved by existing research. This is partly due to a lack of diversity within research populations (as discussed above) but is also a consequence of more deeply rooted issues with defining ‘who carers are’ and recognising who they care for. As such, carer identification, support and information needs were highlighted as important research priorities, and solutions are needed which are tailored to the full spectrum of carer experience. A particular gap was noted relating to carers psychological and mental health needs, and how these might be supported throughout the caregiving journey and into bereavement.
- Health systems research priorities: The organisation and delivery of health care has important implications for family carers, and improving equitable provision of health and social care is a key priority for supporting carers. Generalist palliative care services have an important role in supporting carers and research exploring service delivery among generalists is crucial. Technology based interventions are increasingly common in palliative care but the implications of this for caregiving and not well known, highlighting another key area of future priority.
- Research focused on carer roles and integration within healthcare teams: Carers are acknowledged as vital providers of health care and valued members of the health care team, yet there is little evidence on how carers should be integrated within health care settings. A clear delineation of roles and responsibilities is needed not only to provide clarity around expectations for carers, but also to better understand how to support carers who are embedded within healthcare teams.
The European Association of Palliative Care White Paper has identified gaps and research priorities in palliative care research for family carers. Whilst there has been progress in developing in our understanding of caregiving in palliative care, significant gaps remain, particularly concerning the best ways to support family carers. Research which prioritises an equity perspective is crucial for addressing concerns around underserved groups and marginalised family carer populations. Policy and practice innovations are also required to consider the needs of family carers within health systems globally, particularly in resource poor countries.
===================
ehospice is proud to help promote individual, local, national and international voices in Hospice & Palliative Care
We are on target to have over One Million page views this year.
To stay in touch with colleagues and news around the world subscribe to our free Newsletter
Leave a Reply