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Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration Volume 22, 2021 - Issue 1-2
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Clinical

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

Samar M. Aoun1 Public Health Palliative Care Unit, School of Psychology and Public Health, La Trobe University, Melbourne, Australia;2 Perron Institute for Neurological and Translational Science, Perth, AustraliaCorrespondence[email protected]
ORCID Iconhttps://orcid.org/0000-0002-4073-4805View further author information
ORCID Icon,
Paul A. Cafarella3 Department of Respiratory Medicine, Flinders Medical Centre, Adelaide, Australia;4 School of Psychology, Faculty of Health and Medical Sciences, University of Adelaide, AustraliaORCID Iconhttps://orcid.org/0000-0002-0165-4909View further author information
ORCID Icon,
Bruce Rumbold5 Public Health Palliative Care Unit, Department of Public Health, School of Psychology and Public Health, La Trobe University, Melbourne, AustraliaView further author information
,
Geoff Thomas6 Consumer Advocate Thomas MND Research Group, Adelaide, AustraliaView further author information
,
Anne Hogden7 Australian Institute of Health Service Management, College of Business and Economics, University of Tasmania, AustraliaORCID Iconhttps://orcid.org/0000-0002-4317-7960View further author information
ORCID Icon,
Leanne Jiang1 Public Health Palliative Care Unit, School of Psychology and Public Health, La Trobe University, Melbourne, Australia;2 Perron Institute for Neurological and Translational Science, Perth, AustraliaORCID Iconhttps://orcid.org/0000-0002-1729-9729View further author information
ORCID Icon,
Sonia Gregory8 Natasha Bear Statistics, Perth, AustraliaView further author information
&
David W. Kissane9 Palliative Medicine Research, The University of Notre Dame Australia, Sydney, Australia;10 The Cunningham Centre for Palliative Care Research, St Vincent’s Hospital, Sydney, Australia and;11 Cabrini Psycho-Oncology and Supportive Care Research Unit, Monash University, Melbourne, AustraliaORCID Iconhttps://orcid.org/0000-0002-5930-4573View further author information
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Pages 12-22 | Received 20 Jul 2020, Accepted 17 Aug 2020, Published online: 10 Sep 2020

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Marina Yamamoto, Keiko Tsukasaki & Kaoru Kyota. (2023) Relationship Between Resilience Factors and Caregiving Status of Families of Patients with Amyotrophic Lateral Sclerosis (ALS) in Japan. Journal of Community Health Nursing 0:0, pages 1-13.
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Ana Paula Trucco, Tamara Backhouse, Eneida Mioshi & Naoko Kishita. (2023) Factors associated with grief in informal carers of people living with Motor Neuron Disease: A mixed methods systematic review. Death Studies 0:0, pages 1-15.
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Christopher Poppe, Luzia M. Iseli, Martine Verwey & Tenzin Wangmo. (2022) Bereavement and Support Experiences of Informal Caregivers of Persons with Amyotrophic Lateral Sclerosis: A Qualitative Study. Journal of Social Work in End-of-Life & Palliative Care 18:1, pages 63-79.
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Articles from other publishers (8)

Paul Cafarella, Tanja Effing & Anna Chur-Hansen. (2022) Interventions targeting psychological well-being for motor neuron disease carers: A systematic review. Palliative and Supportive Care 21:2, pages 320-336.
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Deborah A. Levesque, Melissa M. Lunardini, Emma L. Payne & Vanessa Callison-Burch. (2023) Grief in the Workplace: Challenges and Solutions. American Journal of Health Promotion 37:3, pages 426-429.
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Sara S. Johnson. (2023) Opening Commentary: We Have to Talk About the “D” Word. American Journal of Health Promotion 37:3, pages 420-430.
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Orphé Matthys, Sigrid Dierickx, Luc Deliens, Lore Lapeire, Peter Hudson, Chantal Van Audenhove, Aline De Vleminck & Joachim Cohen. (2022) How are family caregivers of people with a serious illness supported by healthcare professionals in their caregiving tasks? A cross-sectional survey of bereaved family caregivers. Palliative Medicine 36:3, pages 529-539.
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Hannah O’Brien & Tony O’Brien. (2022) Palliation in a pandemic: the human cost of achieving the greater good. Palliative Care and Social Practice 16, pages 263235242211417.
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Christopher Poppe, Kathi Schweikert, Tanja Krones & Tenzin Wangmo. (2022) Supportive needs of informal caregivers of people with amyotrophic lateral sclerosis in Switzerland: a qualitative study. Palliative Care and Social Practice 16, pages 263235242210777.
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Alejandro Dominguez-Rodriguez, Sofia Cristina Martínez-Luna, María Jesús Hernández Jiménez, Anabel De La Rosa-Gómez, Paulina Arenas-Landgrave, Esteban Eugenio Esquivel Santoveña, Carlos Arzola-Sánchez, Joabián Alvarez Silva, Arantza Mariel Solis Nicolas, Ana Marisa Colmenero Guadián, Flor Rocio Ramírez-Martínez & Rosa Olimpia Castellanos Vargas. (2021) A Self-Applied Multi-Component Psychological Online Intervention Based on UX, for the Prevention of Complicated Grief Disorder in the Mexican Population During the COVID-19 Outbreak: Protocol of a Randomized Clinical Trial. Frontiers in Psychology 12.
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Samar M. Aoun, Kerrie Noonan, Geoff Thomas & Bruce Rumbold. (2021) Traumatised, angry, abandoned but some empowered: a national survey of experiences of family caregivers bereaved by motor neurone disease. Palliative Care and Social Practice 15, pages 263235242110385.
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