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Cited by 119Grief, Bereavement, and Mental HealthPalliative Care and End-of-Life IssuesPalliative and Oncologic Care

The DOI matches its Crossref record; 32 of the 32 references it cites were found in a registry or an index.

Motor Neurone Disease family carers’ experiences of caring, palliative care and bereavement: An exploratory qualitative study

Aoun, Samar M, Connors, Sianne Lee, Priddis, Lynn, Breen, Lauren J, Colyer, Sue·2012·Palliative Medicine
DOI 10.1177/0269216311416036
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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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Crossref · 10.1177/0269216311416036

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Citations

Cites

Research works printed but not linked: 6

  1. Birks C, 2008, Inquiry into better support for carers1
  2. Martin J, 2001, Amyotroph Lateral Scler, 2, 181
  3. Prigerson HG, 2009, Prolonged grief disorder: PG-13
  4. McConigley R, Aoun SM, Kristjanson L, Colyer S, Deas K, O’Connor M, Implementation and evaluation ofan education program to guide palliative care for people with Motor Neurone Disease. under review.
  5. Aranda S, 2000, Guidelines for the assessment of complicated bereavement risk in family members of people receiving palliative care
  6. Prigerson HG, 2001, Prim Psychiatr, 8, 61

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Metadata

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
ORCID
Venue
Palliative Medicine
Publisher
SAGE Publications
Published
2011-07-20
Volume
26
Issue
6
Pages
842-850
ISSN
  • 0269-2163 (ISSN-L)
  • 1477-030X
DOI
10.1177/0269216311416036
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
Licence
journals.sagepub.com/page/policies/text-and-data-mining-license (tdm)
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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