Motor Neurone Disease family carers’ experiences of caring, palliative care and bereavement: An exploratory qualitative study
Abstract
Background: Motor Neurone Disease (MND) is a neurodegenerative disease with a sudden onset, a rapid progression, a profile of complex disabilities and fatal consequences. Caring for a person with MND is an unremitting commitment, yet little research has examined the experiences and needs of carers for palliative care and bereavement care. Aim: This study explored the experiences of MND family carers, both during their time as carers and following bereavement. Particular attention was paid to the carers’ prolonged grief status and to the implications for service delivery, including palliative care. Design: A qualitative approach consisted of interviews with 16 bereaved family carers. The Prolonged Grief tool (PG-13) measured the carers’ prolonged grief. Setting/participants: sixteen family carers participated in the study, between one and four years after the death of their spouse from MND in Western Australia. Results: The thematic analysis of the interview transcripts revealed five themes – the work of family carers, the change in relationship from spouse to family carer, family caring as a series of losses, coping mechanisms of family carers and supportive and palliative care experiences of family carers. The six participants who met the criteria for prolonged grief disorder accessed palliative care at a later stage in the disease trajectory. Conclusions: The study provided a basis for more research into the role palliative care services has in supporting MND carers before and after the death of their spouse and in particular the provision of more tailored respite and bereavement support.
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Family members caring for people with MND often encounter exceptional strain during caregiving due to the rapid and progressive nature of MND and its incapacitating effects.
“Family members caring for people with MND often encounter exceptional strain during the caregiving experience due to the rapid and progressive nature of MND coupled with the incapacitating effects of the disease.”
From Feasibility, acceptability and potential effectiveness of dignity therapy for family carers of people with motor neurone disease (2014) · cites this paper as [12]
Research has documented distress and burden experienced by MND family carers.
“Research has documented the distress and burden experienced by MND family carers [9-12]”
From Feasibility, acceptability and potential effectiveness of dignity therapy for family carers of people with motor neurone disease (2014) · cites this paper as [12]
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Self-citation
- Authors
- Aoun, S. M., Connors, S. L., Priddis, L., Breen, L. J., & Colyer, S.
- Affiliations
- Curtin University (AU)
- Edith Cowan University (AU)
- Motor Neurone Disease Association of Western Australia, Australia
- Venue
- Palliative Medicine
- Publisher
- SAGE Publications
- Published
- 2011-07-20
- Volume
- 26
- Issue
- 6
- Pages
- 842-850
- ISSN
- 0269-2163 (ISSN-L)
- 1477-030X
- OpenAlex
- W2056238978
- Cited by
- 119
- References
- 32
- Citations by year
- 2026: 4 · 2025: 9 · 2024: 6 · 2023: 12 · 2022: 9 · 2021: 9 · 2020: 12 · 2019: 6 · 2018: 7 · 2017: 8 · 2016: 13 · 2015: 10 · 2014: 6 · 2013: 4 · 2012: 4
- FWCI
- 4.83
- Type
- journal article
- Language
- en
- Open access
- closed
- Locations
- Palliative Medicine (publishedVersion)
- PubMed (publishedVersion)
- Edith Cowan University Research Online (Edith Cowan University) (submittedVersion)
- eSpace (Curtin University) (submittedVersion)
- Funders
- Motor Neurone Disease Association
- Topics
- Social Sciences › Psychology › Clinical Psychology › Grief, Bereavement, and Mental Health
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative Care and End-of-Life Issues
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative and Oncologic Care
- Keywords
- motor neuron disease, family caregivers, prolonged grief disorder, bereavement, palliative care, caregiver experiences, death of a spouse, coping strategies, respite care, bereavement support
- MeSH terms
- Adaptation, Psychological, Aged, Aged, 80 and over, Bereavement, Family, Female, Humans, Male, Middle Aged, Palliative Care, Surveys and Questionnaires, Motor Neuron Disease, Caregivers, Qualitative Research
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