Background The role and function of Care Advisors working for the Motor Neurone Disease Association of Western Australia (MNDA[WA]) has been poorly defined or explained. The high turnover of cares has been suggested to be caused by ‘terminal burnout’ due to the ongoing support carers provide to people living with an aggressive, degenerative neurological condition with death often occurring within months of diagnosis.
Aim The purpose of this research will be to describe the role and function of the MNDA (WA) Care Advisors, find if there are supports for these clinicians which are currently not being met, with the intention of increasing retention of staff.
Methods Qualitative methods will be used including: a literature review of current best practice; observation of interactions with clients; Care Advisor interviews; MND patient interviews about what they see as the role and function of Care Advisors; and review of any workplace guidelines, policies and procedures relating to supportive measures available to the Care Advisors. Thematic analysis will be applied to these data.
Results Results will be presented to the key organisations to underpin development of a supportive framework for Care Advisors. This information will also be submitted to various journals to advance the general world knowledge about MND carers.
Discussion The discussion at this point relates to the anticipated findings and potential benefits of the research. It is anticipated this research may be generalisable to carers for other disease conditions.
Conclusion The research will generate increased knowledge and understanding about the role and function of Care Advisors working with people living with MND.
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