Understanding the care contribution provided by relatives bereaved due to cancer

We are delighted to announce that we have successfully secured funding from Dimbleby Cancer Care for a piece of work looking to understand the contribution of family care for dying relatives affected by cancer. This project is a national postal survey for 5,000 bereaved carers across England which will investigate the end-of-life care they provided and the impact on their wellbeing.

The amount of family care and costs of this contribution remains largely ‘invisible’ and unrecognised in current policy. Family carers provide vital support for patients with cancer towards the end of their life, but little is known about the scale and cost of this contribution. The needs of dying relatives, and in turn family carers, often change rapidly and flexible care arrangements are essential.

The lack of basic information on the characteristics of end-of-life caregiving (who carers are and what they contribute to end-of-life care and to the economy) is likely to be a major barrier to enhancing carer support. Data is needed for appropriate planning and investment, to enable carers to continue supporting patients, and to ensure that their contribution is part of any economic evaluation, particularly as delivery of services continues to move into the community.

Currently only 19% of people die at home yet up to 74% of people say they would prefer to die at home. Family care is vital in making this happen. This survey will help policymakers understand family care contribution better and raise the profile of family carers in end-of-life care.

As well as the CLAHRC GM team, this piece of work involves individuals from the University of Manchester’s School of Nursing, Midwifery and Social Work, the University of York, local carer groups and the Office for National Statistics, with the survey expected to be launched in October 2015 and results in 2016.

As part of the design of the survey we are looking to obtain local carer input; if any individuals or groups are interested in being involved please contact Rebecca Spencer, CLAHRC GM Facilitator.