What did we do?

We’re working to find out the contribution that family carers make during end-of-life care. Carers’ contribution is likely to substantially increase in the last three months of life and currently there’s no quantification of the size and economic impact of a carer’s contribution: it remains largely ‘invisible’ at government, commissioner and service provider level.

 

Why was it important?

Previous research in this area indicates that end-of-life carers feel unheard and unsupported; often palliative home care services do not recognise the importance of carers as co-workers and do not support them sufficiently to support the patient. Providing information on end-of-life caregivers and what they contribute will promote their visibility to commissioners and service providers which can enhance support for carers. This information is needed to plan and invest in carers to help them support patients, particularly as the delivery of care continues to move into the community.

 

How did we do it?

After analysing and reporting on the survey results we now have a profile of the cancer carer population. We are still working with the data but hope to soon report:

• An estimate of the financial value that the care given by family members contributes to society.

• Which types of carers may be most in need of support.

 

Results

While we have drawn some initial findings from the survey responses, there will be more detailed outcomes and findings available once the final analysis is complete in 2017. Of those who responded to our survey, 44.5% were the spouse or partner of the person being cared for, 50.6% lived with the patient and 33.7% lived within 30 minutes of the patient. 53.7% were employed at the time, and 36.4% were retired. The majority of participants were female (64.2%), white (95.7%), with a median age of 60 years.

Our main finding is that carers spend an average of 69 hours and 30 minutes per week caring for their loved one in the last three months of life, which represents a massive caring commitment. This time commitment resulted in changes to employment hours and subsequent loss of earnings for many carers.

In addition to this, there are significant financial burdens for carers: 76.1% of carers reported spending money out of their own pockets during the last three months of life. Costs such as private nursing care, medication, equipment, child care and respite resulted in an average £370 out-of-pocket expenses per patient on top of the care that is already provided by NHS and other free services.

We can see from these results that the cost of informal caring is higher than has been previously estimated and we can now more accurately estimate the full economic value of family caregiving in the UK.

 

Who did we work with?
University of Manchester

University of York 

Office for National Statistics 

 

Funding was secured through Dimbleby Cancer Care.

 

Downloadable resources

 

• News Stories

  Carers of terminally ill up to seven times more likely to have mental health problems (August 2018)

• Blogspot

  When Dimbleby came to breakfast; talking end of life care at the BBC - Christine Rowlands (April 2017)

   

  Family cancer carers deserve the role of expert partners in caring - Rebecca Spencer (July 2015)

• Publications

  Gardiner C, Robinson J, Connolly M, Hulme C, Kang K, Rowland C, Larkin P, Meads D, Morgan T & Gott M., (2020) Equity and the financial costs of informal caregiving in palliative care: a critical debate. BMC Palliative Care Vol 19(71)

   

  Grande G., Rowland C., van den Berg B & Hanratty B., (2018). Psychological morbidity and general health among family caregivers during end-of-life cancer care: A retrospective census survey. Palliative Medicine, Vol 32(10).

   

  Rowland C, Hanratty B, Pilling M, van den Berg B & Grande G., (2017). The contributions of family care-givers at end of life: A national post-bereavement census survey of cancer carers’ hours of care and expenditures. Palliative Medicine. Vol 31(4)

   

• Posters

  Levels of Psychological Distress and Predictors of Distress in Family Carers of Patients with Cancer at End of Life - Grande G, Rowland C, van den Berg B, Batistatou E, Hanratty B

   

  How Do Hours of Care and Caregiving Context Impact on the Psychological Distress and General Health of Family Carers of Patient with Cancer at End of Life? - Gunn Grande

More information
More detailed information on the rationale and research methods employed are available in the Research Protocol.

 

For further information please contact Michael Spence (Programme Manager)