Equity and the financial costs of informal caregiving in palliative care: a critical debate

BMC Palliative Care

David Meads¹  Tessa Morgan²  Clare Gardiner³  Claire Hulme⁴  Phil Larkin⁵  Christine Rowland⁶  Michael Connolly⁷  Merryn Gott⁸  Kristy Kang⁸  Jackie Robinson⁸ 

[1] Academic Unit of Health Economics, University of Leeds;Department of Public Health and Primary Care, University of Cambridge;Health Sciences School, Division of Nursing & Midwifery, The University of Sheffield;Institute of Health Research, University of Exeter Medical School;Institute of Higher Education and Research in Healthcare – IUFRS, University of Lausanne, Lausanne University Hospital;School of Health Sciences, The University of Manchester;School of Nursing, Midwifery and Health Systems, University College Dublin;School of Nursing, University of Auckland;

关键词: Palliative care;    End of life care;    Financial;    Economic;    Costs;    Family carer;   

DOI  :  10.1186/s12904-020-00577-2

来源: DOAJ

【 摘 要 】

Abstract Background Informal caregivers represent the foundation of the palliative care workforce and are the main providers of end of life care. Financial pressures are among the most serious concerns for many carers and the financial burden of end of life caregiving can be substantial. Methods The aim of this critical debate paper was to review and critique some of the key evidence on the financial costs of informal caregiving and describe how these costs represent an equity issue in palliative care. Results The financial costs of informal caregiving at the end of life can be significant and include carer time costs, out of pocket costs and employment related costs. Financial burden is associated with a range of negative outcomes for both patient and carer. Evidence suggests that the financial costs of caring are not distributed equitably. Sources of inequity are reflective of those influencing access to specialist palliative care and include diagnosis (cancer vs non-cancer), socio-economic status, gender, cultural and ethnic identity, and employment status. Effects of intersectionality and the cumulative effect of multiple risk factors are also a consideration. Conclusions Various groups of informal end of life carers are systematically disadvantaged financially. Addressing these, and other, determinants of end of life care is central to a public health approach to palliative care that fully recognises the value of carers. Further research exploring these areas of inequity in more depth and gaining a more detailed understanding of what influences financial burden is required to take the next steps towards meeting this aspiration. We will address the conclusions and recommendations we have made in this paper through the work of our recently established European Association of Palliative Care (EAPC) Taskforce on the financial costs of family caregiving.

【 授权许可】

Unknown