Abstract
Background
The Motor Neurone Disease (MND) Association of Western Australia provides information, education and advocacy for people living with MND. The role and function of the personnel who provide this service has not been described in the literature and is therefore poorly understood by both healthcare professionals and the public.
Purpose
To describe the role and function of the West Australian Motor Neurone Disease Association (MNDA [WA]) Care Advisors (CAs).
Method
Ethnographic observation of seven MNDA (WA) CAs in their normal daily setting. Interviews with end users of CA service (people living with MND and their carers). Analysis of the observations and interview transcripts was undertaken to identify themes.
Findings
The CAs were observed to undertake their supportive role with passion. Clarity around the role and function was ambiguous, even amongst the people in the roles. It is suggested this is due to limited formalised processes and procedures in an organisation that has moved from originally being run by volunteers through to a professional not-for-profit organisation. This in turn led to issues in recruitment and retention, clinical knowledge versus clinical care and demonstrating capabilities against Key Performance Indicators (KPI’s) for reporting to funding bodies.
Conclusion
Multiple opportunities were highlighted during this study for these service providers to develop robust procedures to record the nature of their work, develop resilience in their work place, and ensure ongoing professional develop processes are engaged.