Enabling tailored and coordinated support for family carers of people with Motor Neurone Disease (MND) through adaptation of a Carer Support Needs Assessment Tool (CSNAT) Intervention

Family carers provide vital support for people with Motor Neurone Disease (MND), but caregiving can be very physically and mentally demanding. It is therefore crucial to ensure practitioners/clinicians can give support to carers that is timely and fits their individual needs. We have developed an intervention to help do this, but it needs to be adapted 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 reflect the dual role of carers asking them to consider support they need to care for the patient (coworker role) but also to look after their own health and wellbeing (client role). The person centred process enables identification and prioritisation of support needs by carers themselves, discussion with a practitioner about what would help, and agreement of follow-up actions and review. The intervention has been shown to help carers, but has only been used mainly within hospice care, with practitioners determining the timing of its introduction to carers. We will adapt the intervention to fit the demands of MND caregiving, changes over time and practitioners involved, and
reshape it to give cares themselves control over its use to ensure more coordinated assessment and support.

We will conduct focus groups 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. We will conduct working groups with 20-30 carer advisers and practitioners to decide how the intervention should work in practice, so that carers feel able to use it and practitioners feel able to respond to it. We will ask 15-20 carers to try the new intervention during normal contact with a practitioner, tell us about their experience, and interview the practitioner where possible. This will provide a practical intervention to support MND carers in their caregiving role for further testing