What did we do?

We have developed an intervention to help support carers but we need to ensure it is suitable for MND carers.

 

The intervention consists of an assessment tool (Carer Support Needs Assessment Tool - CSNAT) which is integrated into a person centred process of assessment and support, that is practitioner facilitated but carer-led. The questions on the tool itself ask carers both to consider support they need to care for the patient and also what they need to look after their own health and wellbeing. Specifically we:

 

• Assessed the suitability of CSNAT for MND carers and, where necessary, adapted the intervention to fit the demands and circumstances of MND caregiving.
• Aimed to reshape the CSNAT, giving carers themselves control over its use to ensure more coordinated assessment and support.

 

Why is it important?

Motor Neurone Disease (MND) affects up to 5,000 UK adults at any time and is an incurable, life shortening illness. Family carers provide vital support for people with MND, but caregiving can be very physically and psychologically demanding. It is therefore crucial to ensure practitioners/clinicians can give support to carers that is timely and fits their individual needs.

 

We hope to enable better tailored and coordinated support for family carers of people with MND, through an adaped CSNAT-MND Intervention by identifying:

 

1. their supporting needs;
2. critical time points;
3. main services encountered; and
4. is reshaped as a carer-held intervention to provide better carer control and continuity.

 

By supporting carers in their role we in turn benefit patients. Principles derived from this study are also likely to have wider applicability to carers of patients with a range of life-limiting illnesses.

 

How will we do it?

Research occured over three sites (Salford, Sheffield, Liverpool) andin three stages.

 

Stage 1: We conducted focus groups with MND carers to investigate their support needs, main changes they experience and interactions with practitioners. This helped to develop intervention materials and procedures that allowed review of carer support needs at critical time points with key practitioners.

 

Stage 2: We conducting working groups with 20-30 carer advisers and practitioners to inform how the intervention should work in practice, enabling carers to feel able to use it and practitioners to be able to respond.

 

Stage 3: We asked 15-20 carers to try the new intervention during normal contact with a practitioner, and for the to tell us about their experiences, whilst also interviewing associated the practitioner where possible. This has provided a practical intervention to support MND carers in their caregiving role for further testing.

 

Who we worked with?

• University of Manchester
• University of Cambridge
• Salford Royal NHS Foundation Trust
• Sheffield Teaching Hospitals NHS Foundation Trust
• The Walton Centre NHS Foundation Trust
• Marie Curie Cancer Care
• Motor Neurone Disease Association

 

Downladable resources

• Publications

  Ewing G, Croke S, Rowland C, Grande G., (2021). Suitability and acceptability of the Carer Support Needs Assessment Tool (CSNAT) for the assessment of carers of people with MND: a qualitative study. BMJ Open Neurology. Vol 10. (12)

More information

For more information please contact Michael Spence (Programme Manager).