Understanding Practice: Factors influencing management of cognitive and behavioural changes in MND. A qualitative study using the Theoretical Domains Framework.

Tracks
6
Adult
Cognition
Multidisciplinary practice
Neurological disorders
Professional practice
Friday, June 13, 2025
12:10 PM - 12:20 PM

Overview

Rebecca Francis


Details

⏫ Research insights
⏲️ 12.10pm - 12.30pm
⌛ 20-minutes
📚 Assumed knowledge of attendees: Intermediate (Some previous learning/working knowledge of topic e.g. treated a few cases)


Presenter

Agenda Item Image
Dr Rebecca Francis
Flinders University

Understanding Practice: Factors influencing management of cognitive and behavioural changes in MND. A qualitative study using the Theoretical Domains Framework.

12:10 PM - 12:30 PM

Presentation summary

Introduction: This presentation explores clinical management of cognitive behavioural changes in motor neurone disease (MND), which occur in up to 50% of people with MND (pwMND). However, evidence to guide healthcare practitioners (HCPs) is limited. Current management strategies appear general in nature and draw on evidence from outside the MND context. Consequently, it is unclear how practitioners recognise and manage cognitive and behavioural changes in MND. We evaluated how HCPs from various disciplines understand, recognise and manage cognitive and behavioural changes clinically. We also evaluated HCPs’ attitudes, comfort with and approach to, addressing and screening for these changes. Method: Qualitative design consisting of semi-structured interviews with any HCP working in MND. Responses were analysed deductively using the Theoretical Domains Framework, then inductively themed using thematic analysis. Results: Participants (n=13) came from varied disciplines and locations. Deductive/Inductive analyses revealed several facilitators and barriers to managing cognitive and behavioural changes in MND, captured in six themes: i. Knowledge of cognitive and behavioural changes in MND, ii. Clinical context is both a facilitator and barrier to managing cognitive and behavioural changes in MND, iii. Approaches to managing cognitive and behavioural changes in MND, iv. Overwhelming families living with MND, v. Reflecting on changing practice to manage cognitive and behavioural change in MND vi. Creating professional development for cognitive and behavioural changes in MND. Discussion: Clinical approaches to screening, discussing and managing cognitive and behavioural changes in MND vary substantially. Whilst HCPs expressed that identifying and managing cognitive and behavioural changes in MND is important, most reported this occurred via informal observations, carer report or sometimes not at all. Training based in MND evidence is needed to support HCPs. Further research is needed to determine best approaches to managing cognitive and behavioural changes in MND

Refrences

Francis, R., Attrill, S., & Doeltgen, S. (2021). The impact of cognitive decline in amyotrophic lateral sclerosis on swallowing. A scoping review. Int J Speech Lang Pathol, 23(6), 604-613. https://doi.org/10.1080/17549507.2021.1894235

Francis, R., Attrill, S., Radakovic, R., & Doeltgen, S. (2023). Exploring clinical management of cognitive and behavioural deficits in MND. A scoping review. Patient Education and Counseling, 116, 107942. https://doi.org/https://doi.org/10.1016/j.pec.2023.107942

Gray, D., & Abrahams, S. (2022). International evaluation of current practices in cognitive assessment for motor neurone disease. British Journal of Neuroscience Nursing, 18(1), 38-44. https://doi.org/10.12968/bjnn.2022.18.1.38

Leigh, P. N., Abrahams, S., Al-Chalabi, A., Ampong, M. A., Goldstein, L. H., Johnson, J., Lyall, R., Moxham, J., Mustfa, N., Rio, A., Shaw, C., & Willey, E. (2003). The management of motor neurone disease [Review]. Neurology in Practice, 74(4), iv32-iv47. https://www.scopus.com/inward/record.uri?eid=2-s2.0-10744223929&partnerID=40&md5=782b2d5ee1f8a6d7a118dc60b594101a

Pinto, C., Geraghty, A. W. A., Yardley, L., & Dennison, L. (2021). Emotional distress and well-being among people with motor neurone disease (MND) and their family caregivers: a qualitative interview study. BMJ Open, 11(8), e044724. https://doi.org/10.1136/bmjopen-2020-044724

Radakovic, R., Radakovic, C., Abrahams, S., Simmons, Z., & Carroll, A. (2024). Quality of life, cognitive and behavioural impairment in people with motor neuron disease: a systematic review. Quality of Life Research, 1-12.

Trucco, A. P., Backhouse, T., & Mioshi, E. (2024). Describing and assessing behavioural symptoms in amyotrophic lateral sclerosis with and without frontotemporal dementia: a scoping review. Curr Opin Neurol, 37(5), 603-610. https://doi.org/10.1097/wco.0000000000001293

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Rebecca Francis is a speech pathologist, PhD Candidate and Associate Lecturer at Flinders University, South Australia. She joined the speech pathology teaching section in 2019 and is a current member of the Caring Futures Institute. She has spent the past five years conducting research into dysphagia and cognition. Rebecca’s PhD research is investigating how cognitive and behavioural changes in Motor Neurone Disease impact on swallowing function. Her research is driven by the detrimental impact MND has on family relationships and overall quality of life of both people with the disease and their carers. It aims to provide sound scientific data that facilitates innovative and translational approaches to contemporary and patient-inclusive care in MND.

The information contained in this program is current at of the time of publishing but is subject to changes made without notice.

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