Financial and employment impacts of end of life family caregiving

Family and friends who provide care (family carers) play a vital role in supporting people towards the end of life, yet caring is associated with a range of negative outcomes. These include financial burden and, for carers in paid work, employment impacts. However, there is no evidence from population-level data on the financial impacts of caring for someone at the end of life.

Our study uses data from the UK Household Longitudinal Survey (UKHLS), which collects information from households on an annual basis, to explore the financial and employment impacts of end-of-life care in the UK. Using data from UKHLS we identify people aged > 18 years, who are carers, where the cared for person dies before the household’s next annual interview. We will match carers with those who are not providing care in order to explore the financial impact, including employment, of caring for some at the end of their life. We will look at both the impact whilst they are providing care and up to ten years after the death of the person being cared for. We will also explore whether certain sub-groups of carers (eg different genders, and ethnicities) are particularly at risk of financial and employment impacts. 

Research team

Principal investigators

• Dr Edward Webb, The University of Leeds

Dr Webb is a Senior Research Fellow at the Academic Unit of Health Economics, University of Leeds. He has worked there since graduating with a PhD in economics from the University of Copenhagen in 2016. His research focuses on preferences and decision-making, both for patients as well as health professionals and other stakeholders, as well as how we value health. He has also conducted research using large-scale datasets such as Understanding Society. Topics have included the budget impact of changing end-of-life care benefits eligibility, and how having a long-term health condition, or caring for someone with a long-term health condition, can affect labour market outcomes, finances, and wellbeing.

• Professor Clare Gardiner, The University of Sheffield

Professor Gardiner is Professor of Palliative Care in the School of Allied Health Professions, Nursing and Midwifery. Her research interests are in palliative and end-of-life care, ageing and older people, and mesothelioma. She is particularly interested in research concerning economic aspects of palliative care, particularly the costs of family caregiving. She leads the Palliative and End of Life Care Research Group and is Co-Director of the Mesothelioma UK Research Centre.

Co-investigators

• Dr Juliet Stone, Loughborough University
• Prof Claire Hulme, The University of Exeter
• Dr Emma Carduff, Marie Curie
• Prof Merryn Gott, The University of Auckland, NZ

For more information about the study, contact Professor Clare Gardiner or Dr Edward Webb