THIS MONTH’S EDITOR’S CHOICE FROM ‘PALLIATIVE MEDICINE’…
This week, 13 to 19 October 2019, marks National Carers Week in Australia to recognise and celebrate the outstanding contribution of unpaid carers. And Australia is one of six countries contributing to a study aimed to compare sources of financial support for end-of-life family caregivers…
Dr Clare Gardiner, Senior Research Fellow, The School of Nursing and Midwifery, The University of Sheffield, UK, explains the background to the study and longer article published in ‘Palliative Medicine’
We are really delighted that our article ‘Comparison of financial support for family caregivers of people at the end of life across six countries’ has been chosen as ‘Editor’s choice’ for the October issue of Palliative Medicine.
Our paper is the latest in a series of articles that explore the financial burden of being an informal caregiver for someone who is approaching the end of life. This programme of research began back in 2014 when we published a systematic review on the financial costs of caregiving in palliative care (Gardiner 2014). This issue was obviously a neglected one – we didn’t identify a single paper with the primary focus on the costs of caring. Nonetheless, it was clearly an important problem facing many carers, and the evidence suggested that not only were many carers facing a significant financial burden related to caregiving, but this burden was having considerable detrimental effects on those caregivers and the patients they were supporting.
In 2015 I was fortunate to be awarded a Vice Chancellor’s Fellowship at The University of Sheffield, to continue my work into the economic costs related to palliative care. Subsequent work (Gardiner 2018) identified that despite mounting evidence on the costs facing informal caregivers, these costs often go unacknowledged. Informal caregivers in the UK and worldwide make a huge financial contribution to the provision of palliative care services and, indeed, have been described as the ‘foundation of the palliative care workforce’. Despite this, these costs are rarely acknowledged by the state or by regulatory bodies (such as NICE – The National Institute for Health and Care Excellence)who inform decision-making around resource use in health care.
It was from this stance that we decided to explore what support is available to help family caregivers with the financial costs related to end-of-life caregiving. Evidence from our previous research, and from other authors, identified that whilst financial support was available, it was often underutilised and many carers were missing out. This was confirmed in discussion with our patient and public involvement (PPI) group, the Palliative Care Studies Advisory Group, who spoke passionately about the difficulties of juggling the demands of caregiving with trying to understand the complexities of the welfare and benefits system. As one of our group members explained “You don’t know what you don’t know”,emphasising how difficult it is trying to navigate a completely foreign world of financial benefits and support.
In order to better understand some of these issues, our study aimed to compare sources of financial support for end-of-life family caregivers, across six countries with similarly performing healthcare systems (Australia, Canada, Ireland, New Zealand, the United Kingdom and the United States). We found that whilst financial support is provided across all of these countries, there are multiple barriers to the uptake of this support. These include a lack of clarity around eligibility, inconsistent implementation, complexity in process and limited support for working carers. Unfortunately this means that many carers miss out on benefits to which they are entitled.
Promoting greater recognition of carers’ support through research and information resources
Provision of information about financial support is crucial for carers, but health and social care professionals are often not aware of the myriad of different supports that are available. In response to this, we have produced a freely accessible and downloadable leaflet, which provides information on the financial support that is available to end-of-life carers in England (https://www.sheffield.ac.uk/health-sciences/our-research/nursing-themes/palliative/financial-support-family-caregivers).
In New Zealand, our colleagues have produced a similar leaflet that can be requested from Dr Jackie Robinson.
We hope these information resources will make a difference to the accessibility of financial support for carers. And, through our ongoing research, we hope to continue to promote greater recognition of the support that carers provide, and acknowledgement of the financial contribution they make.
Gardiner C, Ryan T, Gott M. What is the cost of palliative care in the UK? A systematic review. BMJ Support Palliat Care. 2018 Sep; 8 (3):250-257.
Gardiner, C., Brereton, L., Frey, R. et al. Exploring the financial impact of caring for family members receiving palliative and end-of-life care: A systematic review of the literature. Palliative Medicine. 2014, 28 (5). 375 – 390.
This post relates to the longer article,‘Comparison of financial support for family caregivers of people at the end of life across six countries: a descriptive study’ by Clare Gardiner, Beth Taylor, Jackie Robinson, Merryn Gott, published in Palliative Medicine 2019 Volume: 33 issue: 9 page(s): 1189-1211.Article first published online: July 12, 2019. (https://doi.org/10.1177/0269216319861925) Issue published: 1 October 2019.
- Read earlier Palliative Medicine Editor’s Choice posts on the EAPC blog.
- Follow Palliative Medicine on Twitter @palliativemedj
- Contact Dr Clare Gardiner by email.
EAPC members can download this, and all other ‘Editor’s choice’ articles free of charge
If you are currently an Individual or Associate EAPC Member you have full access to the EAPC website, and the chance to download a free PDF of all ‘Editor’s choice’ articles and many other papers too. Just click here – enter your email address and membership password and choose from the list of journal articles.
How to join as an Individual/Associate Member, or to renew your membership
- Click here to join as an Associate or Individual Member, or to renew membership. (Choose relevant national palliative care association if you wish to register free of charge as an Associate Member).
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Note: You can apply to be an Associate Member FREE of charge provided that you are a member of your country’s national palliative care association, and that the association is an EAPC National Association member.