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

Mioshi, Eneida, Heal, Sue and Katangwe-Chigamba, Thando (2024) ‘A lightbulb moment’: Carers’ experiences of behavioural symptoms in motor neurone disease before and after MiNDToolkit. BMC Neurology, 24. ISSN 1471-2377

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Abstract

Background: To explore carers’ experiences of behavioural symptoms in Motor Neurone Disease (MND), before and after using the MiNDToolkit, a novel internet-based 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.

Item Type: Article
Additional Information: Data availability statement: Due to the sensitive nature of the interview data, interviews have not been deposited in public archives. Please contact the corresponding author if interested in developing research collaborations. Funding information: This project was funded by the Motor Neurone Disease Association UK, with additional support from the National Institute for Health and Care Research (NIHR) Applied Research Collaboration East of England (NIHR ARC EoE), and the Clinical Research Network East of England. EM is supported by the National Institute for Health and Care Research (NIHR) Applied Research Collaboration East of England (NIHR ARC EoE) at Cambridgeshire and Peterborough NHS Foundation Trust. The views expressed are those of the authors and not necessarily those of the NIHR or the Department of Health and Social Care.
Uncontrolled Keywords: amyotrophic lateral sclerosis,frontotemporal dementia,carers,caregivers,behavioural symptoms,internet-based intervention
Faculty \ School: Faculty of Medicine and Health Sciences > School of Health Sciences
UEA Research Groups: Faculty of Medicine and Health Sciences > Research Groups > Norwich Clinical Trials Unit
Faculty of Medicine and Health Sciences > Research Centres > Norwich Institute for Healthy Aging
Faculty of Medicine and Health Sciences > Research Groups > Dementia & Complexity in Later Life
Faculty of Medicine and Health Sciences > Research Centres > Lifespan Health
Depositing User: LivePure Connector
Date Deposited: 10 Jul 2024 14:32
Last Modified: 10 Jul 2024 14:32
URI: https://ueaeprints.uea.ac.uk/id/eprint/95856
DOI: 10.1186/s12883-024-03746-5

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