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Who cares for the bereaved? A national survey of family caregivers of people with motor neurone disease


Aoun, SM and Cafarella, PA and Rumbold, B and Thomas, G and Hogden, A and Jiang, L and Gregory, S and Kissane, DW, Who cares for the bereaved? A national survey of family caregivers of people with motor neurone disease, Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration pp. 1-11. ISSN 2167-8421 (2020) [Refereed Article]


Copyright Statement

Copyright 2020 World Federation of Neurology on behalf of the Research Group on Motor Neuron Diseases. This is an Accepted Manuscript of an article published by Taylor & Francis in Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration on 10 Sep 2020, available online:

DOI: doi:10.1080/21678421.2020.1813780


Background:Although Motor Neurone Disease (MND) caregivers are most challenged physically and psychologically, there is a paucity of population-based research to investigate the impact of bereavement, unmet needs, range of supports, and their helpfulness as perceived by bereaved MND caregivers.

Methods: An anonymous national population-based cross-sectional postal and online survey of bereavement experiences of family caregivers who lost a relative/friend to MND in 2016, 2017, and 2018. Recruitment was through all MND Associations in Australia.

Results: 393 valid responses were received (31% response rate). Bereaved caregiver deterioration in physical (31%) and mental health (42%) were common. Approximately 40% did not feel their support needs were met. Perceived insufficiency of support was higher for caregivers at high bereavement risk (63%) and was associated with a significant worsening of their mental and physical health. The majority accessed support from family and friends followed by MND Associations, GPs, and funeral providers. Informal supports were reported to be the most helpful. Sources of professional help were the least used and they were perceived to be the least helpful.

Conclusions: This study highlights the need for a new and enhanced approach to MND bereavement care involving a caregiver risk and needs assessment as a basis for a tailored "goodness of fit" support plan. This approach requires continuity of care, more resources, formal plans, and enhanced training for professionals, as well as optimizing community capacity. MND Associations are well-positioned to support affected families before and after bereavement but may require additional training and resources to fulfill this role.

Item Details

Item Type:Refereed Article
Keywords:motor neurone disease, bereavement support, sources of support, social support, professional support, informal support, physical health, mental health, family caregivers, MND Associations, palliative care, compassionate communities, population survey
Research Division:Biomedical and Clinical Sciences
Research Group:Neurosciences
Research Field:Neurology and neuromuscular diseases
Objective Division:Health
Objective Group:Provision of health and support services
Objective Field:Provision of health and support services not elsewhere classified
UTAS Author:Hogden, A (Dr Anne Hogden)
ID Code:140986
Year Published:2020
Web of Science® Times Cited:4
Deposited By:Australian Institute of Health Service Management
Deposited On:2020-09-17
Last Modified:2022-08-23
Downloads:10 View Download Statistics

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