About this project
This project was developed to ensure that an intervention designed to help support carers, is suitable for Motor Neurone Disease (MND) carers.
Why is it important?
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.
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. Researchers will assess the suitability of CSNAT for MND carers and, if necessary, adapt the intervention to fit the demands and circumstances of MND caregiving. They also aim to reshape the CSNAT to give carers themselves control over its use to ensure more coordinated assessment and support.
Research will occur over three sites (Salford, Sheffield, Liverpool) and be in three stages.
Stage 1: a focus groups will be conducted with 30-36 MND carers to investigate their support needs, main changes they experience and interactions with practitioners. This will help develop intervention materials and procedures that allow review of carer support needs at critical time points with key practitioners.
Stage 2: working groups with 20-30 carer advisers and practitioners will be conducted to decide how the intervention should work in practice, so that carers feel able to use it and practitioners feel able to respond.
Stage 3: 15-20 carers will be asked to try the new intervention during normal contact with a practitioner, they willl also be asked to describe their experience. The practitioner will be interviewed where possible. This will provide a practical intervention to support MND carers in their caregiving role for further testing.
The researchers hope to enable better tailored and coordinated support for family carers of people with MND, through a CSNAT-MND Intervention that is adapted to:
- Their support needs
- Critical time points
- Main services encountered
- 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.