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.
Research suggests that alongside the rewards and pride of caring for a loved one, many carers suffer considerable stress:
- Caring can have a negative impact on health and wellbeing [1]
- 70% of carers will hide their suffering [2]
- Carers are often isolated [3]
- They can miss out on significant employment opportunities in life [4]
- They can face financial hardship. [5]
Carer Support Needs Assessment Tool (CSNAT-I)
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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-I), which is now used internationally. It helps to systematically and holistically assess the needs of individuals who are caring for adults with chronic and progressive conditions.
CSNAT-I is facilitated by specially trained practitioners, but led by carers. It guides carers to further appropriate support.
The research behind CSNAT-I was informed by carers and practitioners. It demonstrates that assessing carers’ needs is therapeutic in itself.
Providing comprehensive, person-centred assessment and support for family carers towards the end of life
In 2018 we published findings from a project looking at the structures and procedures needed to identify, assess and support carers during end of life care. This investigation was carried out by Prof Grande, Dr Gail Ewing and the CSNAT-I team, with the support of Hospice UK and the NIHR Collaboration for Leadership in Applied Health Research and Care Greater Manchester.
The report made 10 recommendations for achieving whole-systems change.
The recommendations
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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.
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Providing comprehensive, person-centred assessment and support for family carers towards the end of life
Read our 10 recommendations for achieving organisational change.
The Current State of Caring for Family Carers in UK Hospices: Findings from the Hospice UK Organisational Survey of Carer Assessment and Support.
2019
This report summarises the provision for carer assessment and support across the hospice sector in the UK. It makes recommendations about how hospices can improve assessment and support for carers.
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
2013
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.
Useful links
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The content and views expressed by the following organisations do not represent the views of Hospice UK.
