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.
Family and carers' needs
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
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.
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:
- Consistent identification of carers within the care setting.
- Demographic and contextual data on who the carer is and their situation.
- A protocol for assessing carers and responding to the assessment.
- A recording system for carer information, separate from patient data.
- A process for training practitioners about carer assessment and support.
- Available time/workload capacity for carer assessment and support.
- Support from senior managers for carer assessment and support.
- Role models/champions for carer assessment and support.
- Pathways for communication about carer assessment and support.
- Procedures for monitoring/auditing processes and outcomes of carer assessment and support.
Read the full report below.
Research evidence on carers and their needs
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:
Current state of caring for family carers in UK hospices
This report summarises the provision for carer assessment and support across the hospice sector in the UK, taken from the Hospice UK Organisational Survey of Carer Assessment and Support (HUK-OSCAS) 2018.
Supporting family carers: report on the evidence of how to work with and support family carers to inform the work of the Commission into the Future of Hospice Care
This report draws together knowledge about how best to work with, and for, family carers of those facing the end of life. It provides recommendations that address important gaps in service provision.
The content and views expressed by the following organisation does not represent the views of Hospice UK.