Costs of Family Caregiving in Palliative Care
The World Health Organisation has identified as one the most significant public health challenges facing the 21st century is the urgent need to develop new, cost-effective, models of palliative and end of life care to support rapidly ageing populations (WHO, 2007). Our taskforce focus directly aligns with the third Sustainable Development Goal, namely to ensure healthy lives and promote wellbeing at all ages and life stages. The number of people dying with palliative care need is rising rapidly in most developed countries; in New Zealand need for palliative care is predicted to double within the next 30 years (MoH, 2017). The development of new care models is limited by the lack of research regarding the economic dimensions of palliative care. Notably, current costing models only account for statutory service costs and do not factor in those costs incurred by family members, for which there are currently no reliable estimates. There are significant methodological challenges of researching in this area, requiring multidisciplinary consideration. It is therefore timely to bring together those with relevant and complementary expertise to work collaboratively to develop the future research agenda.
Aims and Objectives
1. Initiation of an international research network of researchers, clinicians and policymakers with an interest in the area, including early career researchers and postgraduate students.
2. Develop the research agenda through co-authored publications, collaborative grant applications and funded research.
Professor of Health Sciences, University of Auckland, New Zealand
- Dr Jackie Robinson, The University of Auckland, NZ
- Prof Claire Hulme, The University of Exeter, UK
- Assoc/Prof David Meads, The University of Leeds, UK
- Prof Phil Larkin, Universite de Lausanne, Switzerland
- Dr Christine Rowland, University of Manchester
- Dr Michael Connolly, University College Dublin, Ireland
- Kristy Kang, University of Auckland
- Martin Loucka (Czech Republic)- EAPC Board Link
- Tessa Morgan, University of Cambridge
- Prof Tony Ryan, University of Sheffield
- Prof Roger Chung, Chinese University of Hong Kong
- Dr Beth Taylor, University of Sheffield UK.
- Dr Aynharan Sinnarajah, University of Calgary, Canada
1. Our first milestone will be to establish an international network of researchers, clinicians, policymakers with an interest in research on the costs of caring in palliative care. We have already established an international steering group of academics and researchers and we hope to add to this through our links with the EAPC. We are particularly keen to attract early career researchers and postgraduate students and this will be a focus of taskforce recruitment. We will aim to hold an initial meeting of the taskforce at the EAPC World Congress in Palermo, May 2020. Further contact will be achieved by e-mail and Skype and meetings scheduled to coincide with EAPC events and meetings.
2. The taskforce will form the basis of an international, multidisciplinary research collaboration with the aim of furthering the research agenda on the costs of family caring in palliative care. By building a research community in this area we aim to develop a programme of research which will build on our existing expertise and provide internationally relevant data in the area of costs of caring. Specifically we will use the taskforce to develop collaborative relationships which will help leverage funding in the different countries that are represented. For example, EU funding opportunities through Horizon 2020. To begin however, we hope to secure funding from a UK funding body for a small initial project from which we can build. Taskforce members will be encouraged to share intelligence about relevant funding calls and to seek collaborations from within the taskforce.
Gardiner C, Brereton L, Frey R, Wilkinson-Meyers L, Gott M. Approaches to capturing the financial cost of family caregiving within a palliative care context: a systematic review. Health & Social Care in the Community doi: 10.1111/hsc.12253.
Gott M, Gardiner C, Alen R, Moke-Maxwell T, Robinson J. No matter what the cost: A qualitative study of the financial costs faced by family and whānau caregivers within a palliative care context. Palliative Medicine 2015 Jun;29(6):518-28
Gardiner C, Allen R, Moeke-Maxwell T, Robinson J, Gott M. Methodological considerations for researching the financial costs of family caregiving within a palliative care context. BMJ Supportive & Palliative Care 2016;6:445–451
Gardiner, C., Robinson, J., Connolly, M. et al. Equity and the financial costs of informal caregiving in palliative care: a critical debate. BMC Palliat Care 2020, 19, 71. https://doi.org/10.1186/s12904-020-00577-2
Gardiner, C., Taylor, B., Robinson, J., & Gott, M. (2019). Comparison of financial support for family caregivers of people at the end of life across six countries: A descriptive study. Palliative Medicine, 33(9), 1189–1211.