Why and how the work of Motor Neurone Disease Associations matters before and during bereavement: a consumer perspective.

Background: Studies on the experiences of consumers with Motor Neurone Disease Associations at end of life and bereavement are lacking, and their role and capability within the broader sectors of health and disability are unknown.

Objectives: To ascertain the experiences and views of bereaved motor neurone disease caregivers with Motor Neurone Disease Associations about service gaps and needed improvements before and during bereavement and to propose a model of care that fits with consumer preferences and where Motor Neurone Disease Associations are effective enablers of care.

Methods: A national bereavement survey was facilitated in 2019 by all Motor Neurone Disease Associations in Australia.

Family carers' experiences of receiving the news of a diagnosis of Motor Neurone Disease: A national survey.

Family carers have a central role in the care and support of people with MND and face the challenges of the disease from diagnosis to progression and the multiple losses of MND, but their support needs are often neglected. This study aimed to investigate the experiences of family carers at the time of diagnosis and their satisfaction with receiving the news. An anonymous postal survey was facilitated by all MND Associations in Australia (2014) and 190 family carers completed the questionnaire.

Identification and outcomes of clinical phenotypes in amyotrophic lateral sclerosis/motor neuron disease: Australian National Motor Neuron Disease observational cohort.

Objective: To capture the clinical patterns, timing of key milestones and survival of patients presenting with amyotrophic lateral sclerosis/motor neuron disease (ALS/MND) within Australia.

Methods: Data were prospectively collected and were timed to normal clinical assessments. An initial registration clinical report form (CRF) and subsequent ongoing assessment CRFs were submitted with a completion CRF at the time of death.

Breaking the news of a diagnosis of motor neurone disease: A national survey of neurologists' perspectives.

Communication of the diagnosis of MND is daunting for patients and neurologists. This study aimed to establish a knowledge base of current Australian practice of breaking the news of an MND diagnosis, to assess the neurologists' educational and training needs and to compare the feedback obtained from neurologists and patients to international practice guidelines. An anonymous survey of neurologists was undertaken in Australia (2014).