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


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Aoun, SM, Cafarella, PA, Rumbold, B, Thomas, G, Hogden, A ORCID: 0000-0002-4317-7960, Jiang, L, Gregory, S and Kissane, DW 2020 , '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 , doi: 10.1080/21678421.2020.1813780.

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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-basedcross-sectional postal and online survey of bereavement experiences of family caregivers who lost a relative/friend toMND in 2016, 2017, and 2018. Recruitment was through all MND Associations in Australia. Results: 393 validresponses 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 supportwas higher for caregivers at high bereavement risk (63%) and was associated with a significant worsening of their mentaland physical health. The majority accessed support from family and friends followed by MND Associations, GPs, andfuneral providers. Informal supports were reported to be the most helpful. Sources of professional help were the leastused and they were perceived to be the least helpful. Conclusions: This study highlights the need for a new and enhancedapproach to MND bereavement care involving a caregiver risk and needs assessment as a basis for a tailored “goodnessof fit” support plan. This approach requires continuity of care, more resources, formal plans, and enhanced training forprofessionals, 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 Type: Article
Authors/Creators:Aoun, SM and Cafarella, PA and Rumbold, B and Thomas, G and Hogden, A and Jiang, L and Gregory, S and Kissane, DW
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
Journal or Publication Title: Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration
Publisher: Taylor & Francis
ISSN: 2167-8421
DOI / ID Number: 10.1080/21678421.2020.1813780
Copyright Information:

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 FrontotemporalDegeneration on 10 Sep 2020, available online:

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