The DOI matches its Crossref record; 81 of the 81 references it cites were found in a registry or an index.
A 10-year literature review of family caregiving for motor neurone disease: Moving from caregiver burden studies to palliative care interventions
Open accessAbstract
Background: There is growing awareness that different terminal diseases translate into different family caregiver experiences, and the palliative and supportive care needs of these families are both similar and unique. Family members caring for people with motor neurone disease may experience exceptional strain due to the usually rapid and progressive nature of this terminal illness. Aim: The purpose of this review is to synthesize contemporary research and provide a comprehensive summary of findings relevant to motor neurone disease family caregivers, as well as highlight some of the suggested interventions to alleviate burden and improve quality of life for this group. Design: We conducted a comprehensive review of empirical research on family caregiving for people with motor neurone disease in peer-reviewed journals published in English, January 2000–April 2011. Fifty-nine studies met the inclusion criteria. Results: This comprehensive literature review was consistent with previous research documenting the substantial burden and distress experienced by motor neurone disease family caregivers and revealed important points in the trajectory of care that have the potential for negative effects. The diagnosis experience, assisted ventilation, cognitive changes and end-of-life decision making create challenges within a short time. This review has also implicated the need for improvements in access to palliative care services and highlighted the absence of interventions to improve care. Conclusions: Caregiver burden and quality-of-life studies on motor neurone disease family caregivers have so far dominated the research landscape .The focus needs to be on developing interventions that provide direct practical and psychosocial supports for motor neurone disease family caregivers.
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“Previous studies have indicated that there is a need for psychosocial interventions for caregivers, but such interventions are still lacking [6, 20, 21].”
From A blended psychosocial support program for partners of patients with amyotrophic lateral sclerosis and progressive muscular atrophy: Protocol of a randomized controlled trial (2018) · cites this paper as [21]
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“Previous research on ALS caregiving revealed increasing levels of psychological distress in caregivers, a lack of existing interventions and an urgent need for support [7, 21].”
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“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 [9]
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“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 [9]
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“In general, end-of-life caregiving by families is demanding and associated with morbidity and mortality (10-12).”
Dignity Therapy: A Novel Psychotherapeutic Intervention for Patients Near the End of Life
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Resilience and Distress Among Amyotrophic Lateral Sclerosis Patients and Caregivers
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A longitudinal study on quality of life and depression in ALS patient–caregiver couples
Gauthier, A., Vignola, A., Calvo, A., Cavallo, E., Moglia, C., Sellitti, L., Mutani, R., & Chiò, A. (2007) · Neurology · doi:10.1212/01.wnl.0000257093.53430.a8 · Cited by 256
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Supporting lay carers in end of life care: current gaps and future priorities
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Self-citationCaregiving for the terminally ill: at what cost?
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Cited by
Sorted by citations
Amyotrophic lateral sclerosis: improving care with a multidisciplinary approach
Hogden, A., Foley, G., Henderson, R. D., James, N., & Aoun, S. M. (2017) · Journal of Multidisciplinary Healthcare · doi:10.2147/jmdh.s134992 · Cited by 187
Self-citationCaregiver burden in amyotrophic lateral sclerosis: A systematic review
de Wit, J., Bakker, L. A., van Groenestijn, A. V., van den Berg, L. H., Schröder, C., Visser-Meily, J. A., & Beelen, A. (2017) · Palliative Medicine · doi:10.1177/0269216317709965 · Cited by 153
“In previous systematic reviews, the suggestion was made that social support might be a protective factor for caregiver burden, 12,57 but this result could not be confirmed in our review.”
Krug, K., Miksch, A., Peters-Klimm, F., Engeser, P., & Szecsenyi, J. (2016) · BMC Palliative Care · doi:10.1186/s12904-016-0082-y · Cited by 139
“a study with cancer patients [11] and a review on patients with motor neurone disease [12]), but also between unmet needs of patients and caregiver stress burden [13].”
BackgroundLynch, J. J., & Cahalan, R. (2017) · Spinal Cord · doi:10.1038/sc.2017.56 · Cited by 134
Caregiving in ALS – a mixed methods approach to the study of Burden
Galvin, M., Corr, B., Madden, C., Mays, I., McQuillan, R., Timonen, V., Staines, A. S., & Hardiman, O. M. (2016) · BMC Palliative Care · doi:10.1186/s12904-016-0153-0 · Cited by 138
Metadata
- Authors
- Aoun, S. M., Bentley, B., Funk, L., Toye, C., Grande, G., & Stajduhar, K. J.
- Affiliations
- Curtin University (AU)
- University of Manitoba (CA)
- Curtin University, Perth, WA, Australia
- University of Manchester (GB)
- University of Victoria (CA)
- Venue
- Palliative Medicine
- Publisher
- SAGE Publications
- Published
- 2012-08-20
- Volume
- 27
- Issue
- 5
- Pages
- 437-446
- ISSN
- 0269-2163 (ISSN-L)
- 1477-030X
- OpenAlex
- W2143100466
- Cited by
- 152
- References
- 81
- Citations by year
- 2026: 10 · 2025: 14 · 2024: 6 · 2023: 12 · 2022: 15 · 2021: 17 · 2020: 15 · 2019: 8 · 2018: 8 · 2017: 11 · 2016: 14 · 2015: 14 · 2014: 7 · 2013: 1
- FWCI
- 16.27
- Type
- journal article
- Language
- en
- Open access
- Locations
- Palliative Medicine (publishedVersion)
- PubMed (publishedVersion)
- Murdoch University Research Portal (submittedVersion)
- eSpace (Curtin University) (submittedVersion)
- Research Explorer (The University of Manchester) (submittedVersion)
- Topics
- Health Sciences › Nursing › Research and Theory › Nursing care and research
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative Care and End-of-Life Issues
- Health Sciences › Medicine › Clinical Neurology › Amyotrophic Lateral Sclerosis Research
- Keywords
- motor neuron disease, family caregivers, caregiver burden, palliative care interventions, psychosocial support, end-of-life decisions, respiratory support, cognitive change, quality of life, access to palliative care, caregiver distress
- MeSH terms
- Family, Humans, Palliative Care, Quality of Life, Social Support, Stress, Psychological, Motor Neuron Disease, Caregivers, Cost of Illness
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