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Family carers are a vital source of emotional and practical support for people who are living with a life-limiting or terminal condition. Yet carers face many challenges of their own.

On this page you'll find resources about the needs of carers, and how to support them.

This page takes around 10 minutes to read.

Family and carers' needs

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Research suggests that alongside the rewards and pride of caring for a loved one, many carers suffer considerable stress: 

- Carers are twice as likely to suffer from ill-health compared to non-carers

- 70% of carers will hide their suffering

- Carers are often isolated

- They can miss out on significant employment opportunities in life

- They can face financial hardship. 

Carer Support Needs Assessment Tool

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Hospice UK investigated the support needs of carers with Professor Gunn Grande.

Prof Grande and her team developed the Carer Support Needs Assessment Tool (CSNAT), which helps to assess the personalised needs of each carer.

Used internationally, this tool demonstrates that assessing carers’ needs is therapeutic in itself. It also guides you to further appropriate support.

In 2018 Prof Grande and Dr Gail Ewing published findings from a project looking at the structures and procedures needed to identify, assess and support carers during end of life care.

The recommendations

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Providing comprehensive, person-centred assessment and support for family carers towards the end of life: 10 recommendations for achieving organisational change

by Gail Ewing, University of Cambridge and Gunn Grande, University of Manchester

A set of 10 recommendations were identified for key structures and processes required to achieve whole-systems change. All of these were considered important and not consistently met by current provision:

  1. Consistent identification of carers within the care setting.
  2. Demographic and contextual data on who the carer is and their situation.
  3. A protocol for assessing carers and responding to the assessment.
  4. A recording system for carer information, separate from patient data.
  5. A process for training practitioners about carer assessment and support.
  6. Available time/workload capacity for carer assessment and support.
  7. Support from senior managers for carer assessment and support.
  8. Role models/champions for carer assessment and support.
  9. Pathways for communication about carer assessment and support.
  10. Procedures for monitoring/auditing processes and outcomes of carer assessment and support.

Read the full report below.

Research evidence on carers and their needs

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The Commission into the Future of Hospice Care in 2013 pointed to a wealth of research evidence on the role of carers and their needs:

Useful links

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The content and views expressed by the following organisation does not represent the views of Hospice UK.