This study aimed to test a novel online psychoeducational intervention, the MiNDToolkit. The intervention consisted of learning modules and practical strategies, designed specifically to support, help and guide carers with the management of behavioural symptoms that may occur in people living with Motor Neurone Disease
Background
People living Motor Neurone Disease (MND) may experience behavioural and cognitive changes, leading to significant changes in ‘personality’/behaviour and cognitive functions (i.e. planning, concentration and language ability).
Behavioural impairments, including apathy, disinhibition and impulsivity, may have practical impacts within the families of people living with MND, contributing to increased psychological and emotional distress for carers.
To address these challenges, the MiNDToolkit was developed as a resource for managing behavioural symptoms in MND. For carers, the MiNDToolkit offers psychoeducational online modules tailored to support them with strategies for managing the specific behavioural symptoms they report in the care recipient. The MiNDToolkit also provides healthcare professionals with structured tools, including educational content, interactive clinical reasoning exercises, and evidence-based techniques for managing behavioural changes in individuals with MND.
Project Aims
- Test the feasibility of the MiNDToolkit online intervention in MND Specialist Settings
- Explore the potential of several outcome measures for future evaluation studies (trials)
Project Activity
A randomized controlled feasibility trial was conducted, in which carers of people with MND were allocated to either the intervention group (receiving the MiNDToolkit) or the control group (not receiving the intervention).
Participants (carers) were granted access to the online platform and asked to complete screening and baseline questionnaires. Those assigned to the intervention group had access to the MiNDToolkit intervention for three months. Following this period, all participants were asked to complete follow-up questionnaires.
Additionally, a qualitative process evaluation was conducted with carers and healthcare professionals to assess the acceptability and perceived impact of the MiNDToolkit.
Anticipated or actual outputs
MiNDToolkit is a well-accepted and feasible psychoeducational intervention that addresses the needs of carers and HCPs and equips them with knowledge and strategies to effectively manage behavioural symptoms in the person living with MND. A definite randomized clinical trial is essential to establish its efficacy and support its implementation as a standard resource within MND care pathways.
Papers/resources associated with this project
Katangwe-Chigamba, T., Flanagan, E., & Mioshi, E. (2024). Implementation of the MiNDToolkit intervention for the management of behavioral symptoms in MND by healthcare professionals: a mixed-methods process evaluation. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration, 25(5-6), 496-505. https://doi.org/10.1080/21678421.2024.2349924
Mioshi, E., Grant, K., Flanagan, E., Heal, S., Copsey, H., Gould, R. L., Hammond, M., Shepstone, L., & Ashford, P. A. (2024). An online intervention for carers to manage behavioural symptoms in Motor Neurone Disease (MiNDToolkit): A randomised parallel multi-centre feasibility trial. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration, 25(5-6), 506-516. https://doi.org/10.1080/21678421.2024.2350658
Mioshi, E., Heal, S., & Katangwe-Chigamba, T. (2024). 'A lightbulb moment': carers' experiences of behavioural symptoms in motor neurone disease before and after MiNDToolkit. BMC neurology, 24(1), 238. https://doi.org/10.1186/s12883-024-03746-5
Who was involved?
Prof Eneida Mioshi (corresponding researcher)
School of Health Sciences, University of East Anglia
Contact: e.mioshi@uea.ac.uk
