Supporting carers to support patients

Categories: Education.

Family carers are crucial in enabling patients to remain at home towards the end of life. However, most are unprepared for this role, and will need some support to enable them to support the patient and also look after their own needs. 

Liz Gibbons, director of nursing at Hospiscare Devon, explains: “It’s often hard to juggle the priorities in front line end of life/specialist palliative care but the one thing I have grown more certain of during my career as a ward sister, CNS, educationalist and now director is that we ignore the needs and wishes of the informal carer at our peril!

“The daily juggling of who can do what, if and when often hinges on the character and personal strengths of individual carers who are in a ‘role’ often reluctantly, but undertaken nonetheless, who call on their life experience, beliefs, friendships and physical resources in circumstance both scary and new.”

The Carer Support Needs Assessment Tool (CSNAT), developed by researchers at the Universities of Manchester and Cambridge with the help of carers, aims to enable carers themselves to identify their needs, prioritise them, and find the most appropriate support for their particular needs together with health professionals.

The tool has been shown to comprehensively cover the domains that carers need support with when looking after someone in the last months of life. 

Another project participant, Linda Woodman, carer support and user involvement lead at Cotswold Care Hospice, comments: “The domains identified from the initial CSNAT carers interviews concur with our own findings from informal evaluations carried out here at Cotswold Care Hospice when giving support to carers, suggesting that the CSNAT is in step with what we are hoping to achieve.”

This project seeks to implement the CSNAT approach more widely into practice while learning more about its use. Training is provided for participating services who want to use this approach to support carers at home, in return for information about services’ experiences of using the CSNAT and its uptake.

The training has already been developed following feedback from practitioners’ use of the CSNAT in early testing, but the project seeks to learn more about practitioners’ experiences of using the tool, the circumstances that make it easy to integrate CSNAT into practice and when it may be more challenging to use. This will in turn feed back into the training resources for future implementation.

Linda adds: “It will be helpful to be a part of a research project in order to benefit from the resources, training materials and monitoring of the research team, as well as peer support from others taking part in the study. We hope it will provide a basis from which to develop and shape our future services for carers.”

We are currently completing our final wave of recruitment for 2013. Thirty-one services are involved so far, but the project can still take on board some more organisations that would like to participate. 

One training date in London on 30 September is already fully booked and additional dates in London on Friday 27 September, and in Manchester on Wednesday 9 and Friday 18 October, are filling up fast.

For further information please contact Janet Diffin, School of Nursing, Midwifery & Social Work, The University of Manchester.

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