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.
Overview
The claims and statistics of this paper haven’t been checked yet.
Run the check — free, no account needed. It reads the open-access text and checks the sources it cites.
Integrity signals
Registry
Cites
Statistics
Verification
Claims the paper makes
The claims and statistics of this paper haven’t been checked yet.
Run the check — free, no account needed. It reads the open-access text and checks the sources it cites.
Claims other papers make about this one
Each is checked against this paper’s own text: does it say what the citing paper says it does?
The source backs part of the claim, not all of it — or backs it for a different population, condition or comparison.
In the citing paper
“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]
Experimental — accuracy not yet measuredThe cited source says what the claim attributes to it.
In the citing paper
“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].”
The cited source says what the claim attributes to it.
In the citing paper
“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]
The cited source says what the claim attributes to it.
In the citing paper
“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]
Self-check
Percentages, sums and reported differences re-computed from the paper’s own numbers.
The self-check needs the paper’s full text.
Citations
Cites
Pinquart, M., & Sörensen, S. (2003) · The Journals of Gerontology: Series B · doi:10.1093/geronb/58.2.p112 · Cited by 1,108 · cited 1×
“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
Chochinov, H. M., Hack, T., Hassard, T., Kristjanson, L. J., McClement, S., & Harlos, M. (2005) · Journal of Clinical Oncology · doi:10.1200/jco.2005.08.391 · Cited by 1,033
Mitchell, J. D., & Borasio, G. D. (2007) · The Lancet · doi:10.1016/s0140-6736(07)60944-1 · Cited by 606
Resilience and Distress Among Amyotrophic Lateral Sclerosis Patients and Caregivers
Rabkin, J. G., Wagner, G. J., & Del Bene, M. (2000) · Psychosomatic Medicine · doi:10.1097/00006842-200003000-00020 · Cited by 288
Kaub-Wittemer, D., von Steinbüchel, N., Wasner, M., Laier-Groeneveld, G., & Borasio, G. D. (2003) · Journal of Pain and Symptom Management · doi:10.1016/s0885-3924(03)00323-3 · Cited by 260
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
Caregiver burden and patients’ perception of being a burden in ALS
Chiò, A., Gauthier, A., Calvo, A., Ghiglione, P., & Mutani, R. (2005) · Neurology · doi:10.1212/01.wnl.0000162034.06268.37 · Cited by 223
Diagnosis and management of motor neurone disease
McDermott, C. J., & Shaw, P. J. (2008) · BMJ · doi:10.1136/bmj.39493.511759.be · Cited by 220
Supporting lay carers in end of life care: current gaps and future priorities
Grande, G., Stajduhar, K., Aoun, S. M., Toye, C. M., Funk, L. M., Addington-Hall, J. M., Payne, S. A., & Todd, C. J. (2009) · Palliative Medicine · doi:10.1177/0269216309104875 · Cited by 220
Self-citationCaregiving for the terminally ill: at what cost?
Aoun, S. M., Kristjanson, L. J., Currow, D. C., & Hudson, P. (2005) · Palliative Medicine · doi:10.1191/0269216305pm1053oa · Cited by 206
Self-citation
Research works printed but not linked: 3
- Rowland LP, 2005, Merritt’s neurology, 861
- Oliver D, 2004, Eur J Palliat Care, 11, 185
- McConigley R, Palliat Med
Cited by
Sorted by citations
Items 101–152 of 152
Lero, C., Park, S., & Mroz, E. L. (2025) · Palliative & Supportive Care · doi:10.1017/s1478951524001639 · Cited by 4
Rawlinson, C. V., Gould, R. L., McDermott, C. J., Thompson, B. T., Weeks, K., Gossage-Worrall, R., Serfaty, M. A., Graham, C. D., McCracken, L. M., White, D. A., et al. (2024) · The Cognitive Behaviour Therapist · doi:10.1017/s1754470x24000333 · Cited by 5
“Substantial levels of psychological distress and burden have also been reported in caregivers of plwMND due to the nature of MND and the challenges it brings (Aoun et al ., 2013).”
Meeting the needs of carers of people at the end of life
Hardy, B. (2018) · Nursing Standard · doi:10.7748/ns.2018.e11128 · Cited by 4
“All carers of people at the end of life will have support needs, but different diagnoses will give rise to different carer experiences and supportive care needs (Aoun et al 2013).”
BackgroundTrucco, A. P., Mioshi, E., Kishita, N., Barry, C., & Backhouse, T. (2023) · Palliative & Supportive Care · doi:10.1017/s147895152300158x · Cited by 4
“Carer grief has also been explored (Aoun et al. 2012; Oyebode et al. 2013; Whitehead et al. 2012).”
O'Brien, M., Jack, B., Kinloch, K., Clabburn, O., & Knighting, K. (2019) · British Journal of Neuroscience Nursing · doi:10.12968/bjnn.2019.15.3.114 · Cited by 3
Leite, L., de Novais, T. C. L., França, M., & Chun, R. (2021) · Revista CEFAC · doi:10.1590/1982-0216/202123414120 · Cited by 3
“…point out the lack of knowledge about the disease and negative experiences in the diagnosis and treatment, especially related to the lack of empathy from the medical team, as an aggravating factor of the quality of life, both the ALS individual and of his/her family member and/or caregiver 11 .”
BackgroundResultInfluentialWilson, E., Turner, N., Palmer, J., Davidson, S., Turner, M. R., & Faull, C. (2025) · Disability and Rehabilitation · doi:10.1080/09638288.2025.2574536 · Cited by 3
“The inevitable progression of MND and increasing care requirements has been shown to result in a growing care burden for family members and slow sacrifice of their own lives [35,36].”
Aoun, S. M., O'Brien, M. R., & Knighting, K. (2024) · Palliative Care and Social Practice · doi:10.1177/26323524241228306 · Cited by 3
Self-citationPrizer, L. P., & Hudson, P. (2023) · Handbook of clinical neurology · doi:10.1016/b978-0-12-824535-4.00014-8 · Cited by 3
The need to consider ‘temporality’ in person‐centred care of people with motor neurone disease
Harris, D., Jack, K., & Wibberley, C. (2023) · Journal of Evaluation in Clinical Practice · doi:10.1111/jep.13854 · Cited by 3
Kredentser, M. S., Mackenzie, C. S., McClement, S., Enns, M. W., Hiebert‐Murphy, D., Murphy, D. J., & Chochinov, H. M. (2023) · Palliative & Supportive Care · doi:10.1017/s147895152300127x · Cited by 3
Theme 13 Clinical management and support
Crook, A., Hogden, A., Mumford, V., Blair, I. P., Williams, K. L., & Rowe, D. B. (2019) · Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration · doi:10.1080/21678421.2019.1647002 · Cited by 3
Home symptom management training programme: carer evaluation
Parker, D., Reymond, L., Cooper, K., Tieman, J., & Ivynian, S. E. (2022) · BMJ Supportive & Palliative Care · doi:10.1136/bmjspcare-2022-003580 · Cited by 2
Barker, T. H., Bulto, L. N., Holland, G., Schubert, C., Merlin, T., Karam, S. G., Wiercioch, W., Pollock, D., Stern, C., Beasley‐Hall, J., et al. (2026) · Clinical and Public Health Guidelines · doi:10.1002/gin2.70080 · Cited by 2
“2 % a t s i x ‐ m o n t h f o ll o w ‐ u p [ 5 9 ] .”
Douglas, A., McPhee, M., Fisher, F., Cheng, C. C., Henders, A. K., Ziser, L., Stout, J. C., Kiernan, M. C., Osborne, R. H., & Mathers, S. (2025) · BMC Health Services Research · doi:10.1186/s12913-025-12998-x · Cited by 2
“This parallels the literature on caregiver burden for MND families, which has highlighted a need for increased access to health information and respite care [33].”
Burden among family caregivers of mechanically-ventilated patients
Szatkowska, K. (2020) · Psychiatria i Psychologia Kliniczna · doi:10.15557/pipk.2020.0036 · Cited by 2
Elizabeth Casson Memorial Lecture 2020: Re-engineering truth and certainty in occupational therapy
Preston, J. (2021) · British Journal of Occupational Therapy · doi:10.1177/03080226211035682 · Cited by 2
“…confirms this positive impact of supporting someone living with a longterm condition and how it can continue to affect families after death, despite the end to caregiving (Anoun et al., 2013), but how often do you hear an occupational therapist respond in that way to the question ‘what do you do?’”
Parker, D., Reymond, L., Cooper, K., Tieman, J., & Ivynian, S. E. (2023) · International Journal of Palliative Nursing · doi:10.12968/ijpn.2023.29.11.538 · Cited by 2
Needs of caregivers of amyotrophic lateral disease: a pilot study on multidisciplinary intervention
de la Cuesta, D. G., Sánchez, M. C. E., Fregenal, B. H., & Marsal, J. O. C. (2021) · Revista Científica de la Sociedad de Enfermería Neurológica (English ed ) · doi:10.1016/j.sedeng.2020.09.002 · Cited by 1
Pereira-Elizeu, A. V., Panisset, J. D. Á., Silva, M. L. R.-D., da Silva-Paz, L. P., Cunha, K. D. C., da Silva, M. L., & de Sá, N. M. (2023) · Revista de Neurología · doi:10.33588/rn.7708.2023210 · Cited by 1
“Socioeconomic factors are not as well studied as psychosocial factors [33] despite their important influence on access to, and choice of, medications [26].”
BackgroundAdams, A., Miller-Lewis, L. R., & Tieman, J. (2024) · Informatics for Health and Social Care · doi:10.1080/17538157.2024.2433942 · Cited by 1
“19,20 The Australian CarerHelp Toolkit To address the informational needs of family carers, the Australian Government funded a multi-institutional collaborative project to develop CarerHelp, a freely accessible, nationally relevant online toolkit, to support family caregivers of relatives or…”
Okoh, C., Mayall, L. A., Makin, S. M., Chen, C., & Zarotti, N. (2025) · Brain Sciences · doi:10.3390/brainsci15020112 · Cited by 1
Trauma Experience and the Impact on Caregivers in Formal and Family Settings: Ethical Considerations
Morley, G., & Isham, L. (2025) · Springer eBooks · doi:10.1007/978-3-031-87526-7_6 · Cited by 1
Neville, S., Ngo, S., Steyn, F., & Packer, R. L. (2026) · Disability and Rehabilitation · doi:10.1080/09638288.2026.2690908 · Cited by 1
Motoneuron diseases: impact on health professionals
Cerutti, P., Solara, V., & Ferrario (2025) · Giornale italiano di medicina del lavoro ed ergonomia · doi:10.4081/gimle.654 · Cited by 1
“In fact, the progression of the disease, with the decline of physical – and sometimes cognitive – function, and the increasing difficulties in communication constitute a challenge for patients and caregivers, who have to adjust to the changes over time (5, 6).”
BackgroundBrewah, H. (2019) · Primary Health Care · doi:10.7748/phc.2019.e1515 · Cited by 1
Caregiver Burden and Quality of Life in Amyotrophic Lateral Sclerosis
Şirinocak, P. B., Şirin, T. C., & Adatepe, N. U. (2022) · Kocaeli Medical Journal · doi:10.5505/ktd.2022.44788 · Cited by 1
Zacharias, L., Thomas, P. T., Warrier, M. G., Yadav, R., Alladi, S., Nalini, A., & Pal, P. K. (2024) · Indian Journal of Palliative Care · doi:10.25259/ijpc_181_2023 · Cited by 1
Braben, L., Khatiwada, D., Cramond, L., Bradley, B. F., & Chhetri, S. K. (2025) · BMJ Open · doi:10.1136/bmjopen-2024-091503 · Cited by 1
Home- and Community-based Medical Care for Neurodegenerative Diseases: ALS as an Illustration
Nagasaka, T., & Takiyama, Y. (2015) · Springer eBooks · doi:10.1007/978-4-431-54541-5_11 · Cited by 1
The effect of mechanical ventilation on quality of life in patients with motor neurone disease
Smith, S. L., & McLeod, A. (2015) · British Journal of Neuroscience Nursing · doi:10.12968/bjnn.2015.11.5.220
Quality of life in amyotrophic lateral sclerosis: a review
Mays, I., Galvin, M., Connoly, S., & Hardiman, O. M. (2015) · F1000Research · doi:10.7490/f1000research.1097547.1
Wall, D. G., & Wall, J. R. (2015) · Contemporary Psychology · doi:10.1037/a0038938
Cesim, Ö. B., Akel, B. S., & Öksüz, Ç. (2018) · Ergoterapi ve Rehabilitasyon Dergisi · doi:10.30720/ered.405401
Chu, H. S., & Tak, Y. R. (2020) · Palliative & Supportive Care · doi:10.1017/s1478951520000371
de la Cuesta, D. G., Sánchez, M. A. C. E., Fregenal, B. H., & Marsal, J. O. C. (2020) · Revista Científica de la Sociedad Española de Enfermería Neurológica · doi:10.1016/j.sedene.2020.09.001
Steinberg, T., & Hadler, R. A. (2021) · Elsevier eBooks · doi:10.1016/b978-0-323-56724-4.00043-5
The Care Burden of Chinese Migrant Peasant Workers
He, L. (2021) · Springer eBooks · doi:10.1007/978-981-16-1880-2_1
Communication with a neurological patient
Витальевна, Б. Е., Владимировна, Х. А., Zimnyakova, O. S., & Федорова, Н. В. (2022) · S S Korsakov Journal of Neurology and Psychiatry · doi:10.17116/jnevro202212202136
Living with a long‐term neurological condition
Preston, J., & Edmans, J. (2016) · doi:10.1002/9781119223719.ch9
Being Black in Health Promoting Schools (HPS)
Nyika, L. (2023) · Springer eBooks · doi:10.1007/978-3-031-44702-0_3
Malloy, E., Corrie, S., & Cushen-Brewster, N. (2025) · Palliative & Supportive Care · doi:10.1017/s1478951524002141
Bamber, R. W., Carlton, J., McDermott, C. J., & Stavroulakis, T. (2025) · Health and Quality of Life Outcomes · doi:10.1186/s12955-025-02427-2 · Cited by 1
“Additionally, terminal diseases are known to underlie distinct caregiver experiences [2]and in rare diseases, such as ALS, condition-specific HRQoL PROMs can demonstrate increased sensitivity [23].”
Olesen, L. K., Moèll, S. K., & Knudsen, L. (2026) · Journal of Social Work in End-of-Life & Palliative Care · doi:10.1080/15524256.2026.2672970
“…care-givers are at increased risk of adverse effects on their wellbeing in every aspect of their lives, e.g. their health, quality of life, social relationships and economic security (Aoun et al., 2013; Burke et al., 2018; Galvin et al., 2016; Sandstedt et al., 2018; Schischlevskij et al., 2021).”
Turkmenel, N., & Uşkun, E. (2026) · Quality of Life Research · doi:10.1007/s11136-026-04318-5
Düzenli, E. G., Yüksek, S., & Zengin, S. (2026) · Gazi Beden Eğitimi ve Spor Bilimleri Dergisi · doi:10.53434/gbesbd.1946626
Wilson, E., Turner, N., Macdonald, G. M., & Faull, C. (2026) · Palliative Care and Social Practice · doi:10.1177/26323524261452739
“18 These findings highlight the fragmented and high-risk nature of care for extremely vulnerable plwMND. Aoun et al. 8 describe how family carers often assume the role of care coordinators, navigating complex, and disjointed systems to secure appropriate support.”
Liao, S., Duan, S., Xie, X., Wang, L., Zhang, L., & Lyu, J. (2026) · BMC Nursing · doi:10.1186/s12912-026-05157-y
“Collectively, these responsibilities contribute to substantial caregiving burdens [7, 8].”
Chan, J., Chow, A. Y. M., Cong, Q., Yu, W. C., Chen, Q., Ha, C. S. W., Cheung, M. K. Y., Chun, G. K. M., & Chung, P. H. (2026) · BMC Palliative Care · doi:10.21203/rs.3.rs-10509545/v1
Ahmad, R., Naeem, M., & Houlden, H. (2026) · Molecular Biology Reports · doi:10.1007/s11033-026-12618-9
“The ensuing muscle weakness leads to rapid functional decline and reduced ability to perform daily activities [ 23].”
Specialist psychology provision for ALS/MND: results from a survey of UK ALS/MND services
Mayberry, E. J., Creer, S., Griffiths, A. W., Hobson, E., Davies, S., Bedford, J., Gould, R. L., & McDermott, C. J. (2026) · Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration · doi:10.1080/21678421.2026.2742816
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
About these checks
Registry, retraction, Cites and statistics results are computed, not judged, with one exception: a printed reference that no index lists is read once by a model before it counts as a citation error. Claims are extracted by a model and kept only when their quote appears verbatim in the text; each cited source is then checked, with a model’s help, for whether it says what the claim relies on. Those verdicts can be wrong — read the claim’s quote and the cited source before relying on one.
Statistics and arithmetic are recomputed, not judged.
Confidence bands are shown only for fields calibrated on our annotated test set. None is calibrated yet, so no band is shown.
What counts as a claim ›How we measure confidence ›How we check this ›
Are you an author, or do you see a problem with this page? Request a review
