Abstract
Background Family carers play a vital role in supporting people with Motor Neurone Disease (MND) but face substantial physical and mental demands in doing so. Timely support from healthcare professionals is crucial to enable carers to fulfil their caregiving role and to look after their own wellbeing. The Carer Support Needs Assessment Tool (CSNAT) intervention is an evidence-based approach for person-centred assessment and support. This project aimed to: (i) adapt the CSNAT intervention to the context of MND care; (ii) test implementation of the adapted CSNAT-MND intervention within specialist MND services. Methods Stage 1: focus groups and interviews with 14 bereaved and 19 current carers to explore support needs (met and unmet) and supportive inputs at key stages of the patient’s illness. Stage 2: workshops with 24 practitioners and 19 carer advisers to adapt the content of CSNAT intervention and its delivery within MND care. Stage 3: implementation of CSNAT-MND in three specialist MND services; interviews with practitioners and carers exploring their experiences of the intervention. Results Content of CSNAT-MND included an additional domain on support with relationships. Intervention implementation adapted to (1) legitimise assessment of carer support needs as part of routine care in MND by practitioners, (2) delivery of a stand-alone introduction stage of the CSNAT-MND intervention and (3) provide a dedicated assessment and planning conversation at a subsequent contact. This basic model was then suited to fit the working practices of three different MND services. We will present challenges of tailoring and implementing the CSNAT-MND intervention in real life practice. Conclusion Implementation of the CSNAT-MND requires the establishment of a clear protocol defined at service level. This project provides insights into how carers of people with MND want to be assessed and supported, how this process can be delivered, and the feasibility of implementing the CSNAT-MND in practice.
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