Approving HREC: UNSW – Approval Number: 9529
Study overview:
This research aims to optimise the impact of the motor neurone disease (MND) care coordinator in supporting Australians living with MND.
We are conducting a two‑stage study:
• Stage One: We want to better understand the role and responsibilities of MND care coordinators working in MND-specific clinics or services in the public and private health systems in the Australian context and identify challenges, barriers and facilitators that impact how they perform their role.
• Stage Two: Building on these insights from Stage One, we will co‑design a framework that outlines the core components of the MND care coordinator role to optimise impact, strengthen and standardise care delivery and support for people living with MND and their families.
At present, we are recruiting for Stage One, and your input will be valuable in helping us understand what role MND care coordinators play in MND care and support. In this stage, we aim to explore the role and responsibilities of MND care coordinators who are healthcare professionals whose primary role is to serve as the central point of contact for people living with motor neurone disease and their families within MND-specific specialist clinics or services. These MND-specific services can be in either public or private health systems.
Stage One involves online surveys with MND stakeholders and interviews with MND care coordinators.
Target population:
We are seeking feedback from:
MND care coordinators (healthcare professionals with a primary role as the central point of contact for people living with MND and their families within MND-specific specialist clinics or services. These MND-specific services can be in either public or private health systems): https://redcap.link/mndcc
People living with MND, carers or former carers of a person living with MND who have engaged with these MND care coordinators (as defined above): https://redcap.link/mndcc-plex
Health or social care providers who work with MND care coordinators (as defined above): https://redcap.link/mndcc-hscp
What does participation involve?
20 minute online survey.
MND care coordinators are also invited to complete a 60 minute in-depth interview.
To participate please contact:
Zoi Triandafilidis – mndcoordinators@unsw.edu.au