‘A lightbulb moment’: carers’ experiences of behavioural symptoms in motor neurone disease before and after MiNDToolkit

Abstract Background: to explore carers’ experiences of behavioural symptoms in Motor Neurone Disease (MND), before and after using the MiNDToolkit, a novel online psychoeducational intervention to support management of behavioural symptoms (BehSymp) in MND. The study also investigated carers’ views and acceptability of MiNDToolkit. Methods: A qualitative process evaluation of carers engagement with, and acceptability of, the MiNDToolkit conducted using semi-structured interviews with carers (n=11). All interviews were audio-recorded, professionally transcribed verbatim and analysed thematically. Results: five themes were identified: 1) In the dark – carers’ experiences and reactions to BehSymp; 2) Others can see: the role of HCPs in identifying symptoms – and perceived opportunities for carers to receive support; 3) Shedding light: carers implementation and perceived impact of the MiNDToolkit content; 4) Acceptability and carers’ engagement with MiNDToolkit; 5) future implementation. Carers’ experience of BehSymp was particularly distressing when symptoms were apparently out of context. MiNDToolkit appeared to support learning that BehSymp were part of MND. Content resonated with carers, who reported learning about the full picture of MND, which led to acceptance and use of newly learned strategies. Engagement with the platform was good, with varied input from HCPs. Greater and nuanced involvement from HCPs seem important to support management of BehSymp. Recommendations for a full-scale trial emerged, including adding a paper booklet to accompany the intervention and creation of new modules on emotional lability, changes in relationships, and transitioning to a care home. Conclusions: MiNDToolkit was acceptable to carers overall. Recommended improvements should be actioned in a full-scale trial.