Background Motor Neurone Disease (MND) is a life-shortening condition with no cure. Consequently, hospice and palliative care are recommended from diagnosis. Family carers provide vital support for people with MND but caregiving can be very physically and mentally demanding. It is therefore crucial to ensure healthcare practitioners (HCPs) can provide timely support to carers fitting their individual needs. Currently there are no UK interventions for this.
Aim To adapt an existing Carer Support Needs Assessment Tool (CSNAT) intervention for comprehensive person-centred carer to support the needs and situation of family carers of people with MND.
Focus groups and interviews with 33 carers (14 bereaved, 19 current carers) to capture their self–defined needs, key points of change during patient’s illness, and main support services.
Workshops with HCPs (N=22) and carer advisors (N=19) to inform materials and procedures for MND carer assessment and support.
Results Stage 1: Carers’ experience was one of dealing with a devastating diagnosis, a constantly changing situation with heavy dependence on them as carers, and with little consideration of their separate support needs. Carers’ support needs mainly mapped onto CSNAT domains, but some MND carers experienced relationship issues warranting further consideration. Stage 2 (on-going) will review carer advice on the need for a further CSNAT domain to address relationship issues; HCP and carers’ views obtained at workshop discussions explore when, where, how and by whom MND carer assessment and support should best be provided in a practice context.
Conclusions Study findings will provide insights into how MND carers want to be assessed and supported and how HCPs felt this approach could be delivered in practice. Understandings obtained from Stages 1 and 2 will form the basis for an intervention to be tested in a future Stage 3 feasibility study.
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