Research News

Dr. Rebecca Francis Families with MND as partners:

Developing a joint approach to clinical discussions and management of cognitive and behavioral changes

Published: 05 June 2026

Dr. Rebecca Francis was funded through the MND South Australia MND Care Research Grant, an MND Australia Innovator Grant for her project, Families with MND as Partners: Developing a Joint Approach to Clinical Discussions and Management of Cognitive and Behavioural Changes.   This project achieved its aim of co-designing a practical, person-centred framework and educational resource to support families and clinicians in discussing cognitive and behavioural changes in MND. Rebecca and her research team undertook a generative co-design study in three interrelated phases and engaged people with lived experience of MND and healthcare professionals to identify needs, create solutions, and refine these for clinical feasibility.  

Phase 1 involved semi-structured interviews with families, which highlighted the need for clear information and care pathways, timely and individualised support, and stronger continuity and trust between families and clinicians.  Co-researchers also emphasised that experiences of cognitive and behavioural changes vary considerably, reinforcing the importance of flexible, tailored approaches rather than a one-size-fits-all model. 

In Phase 2a, five iterative workshops and online surveys transformed the insights from Phase 1into tangible outputs. This included a plain-language brochure to provide education about cognitive and behavioural changes in MND, a proposed workflow for integrating these discussions into multidisciplinary care, and a framework to guide the development and delivery of future resources. In Phase 2b, Interviews with multidisciplinary healthcare professionals confirmed the value and feasibility of these resources and informed further refinements. 

“I learnt more about cognitive and behavioural changes and made a contribution to the broader MND community.”

                               Workshop Participant 

The project produced a brochure prototype, implementation workflow, Program Logic Model, and roadmap for future research, clinician education, and sustainable practice change. Families also reported that participation in the research fostered connection, validation, purpose, and the opportunity to have their voices heard.

“The support from MND Australia and MND SA for advancing care-focused research is incredibly important. Investing in this work ensures that people living with MND — and the families who stand beside them — receive the highest standard of care. I am incredibly privileged to work in this area of research”                                                                     Dr Rebecca Francis