Exploring the financial and employment impacts of end of life family caregiving in the UK

University of Sheffield

University of Leeds

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 will use 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 caring in the UK.

Using data from UKHLS we will identify people aged 18 years and under 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, ethnicities) are particularly at risk of financial and employment impacts. Finally, working alongside our Patient and Public Involvement panel and the Marie Curie Policy team, we will host two stakeholder workshops where we will develop a policy roadmap which will outline the steps required to implement policy change to better support end of life carers.