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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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Self-citationExperiences of caring for a family member with Parkinson's disease: a meta-synthesis
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InfluentialSelf-citationBentley, B., O’Connor, M., Breen, L. J., & Kane, R. (2014) · BMC Palliative Care · doi:10.1186/1472-684x-13-12 · Cited by 46
“Research has documented the distress and burden experienced by MND family carers [9-12], and shown the close correlation of distress levels in patient-carer couples [13,14].”
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“This is probably due to the facts that studies have commonly concentrated on viewpoints other than families (Aoun et al., 2013; Chi et al., 2016; Hasson et al., 2020; Henoch et al., 2016), that intervention studies have been mainly conducted in home and community care (Becqué et al., 2019; Candy et…”
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“When there are barriers to receiving EOL care and supports, the burden falls on family carers and exacerbates their distress at a time when they are particularly vulnerable.(7) As death approaches, the support resources required of MND family carers may be greater than those of the patient,(20) and adequate supports a…”
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“Previous studies indicate a significant role of social support in reducing care-related stress (81, 82, 92, 93), burden of care (15, 46–48), and depression (84).”
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“A recent systematic review of the MND caregiver literature identified the need for more intervention studies in this population, noting that descriptive studies have dominated the literature (Aoun et al., 2013).”
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“Family caregivers play a key role in ALS care, providing care for 47 h per week on average [24] and actively participating in clinical decision making [25].”
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“There is, however, evidence that the caregiver’s burden increases as the disease worsens and becomes very onerous with dying patients (27).”
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de Wit, J., Beelen, A., Drossaert, C. H. C., Kolijn, R., van den Berg, L. H., Visser-Meily, J. M. A., & Schröder, C. D. (2018) · BMC Psychology · doi:10.1186/s40359-018-0232-5 · Cited by 12
“Previous studies have indicated that there is a need for psychosocial interventions for caregivers, but such interventions are still lacking [6, 20, 21].”
BackgroundConroy, É., Kennedy, P., Heverin, M., Hardiman, O., & Galvin, M. (2023) · BMJ Open · doi:10.1136/bmjopen-2022-064254 · Cited by 12
Trucco, A., Backhouse, T., Mioshi, E., & Kishita, N. (2023) · Death Studies · doi:10.1080/07481187.2023.2191351 · Cited by 12
“For example, healthcare professionals ’ unempathetic way of communicating the diagnosis of MND had a negative impact on anticipatory grief (Aoun et al., 2012).”
BackgroundInfluentialVelaga, V. C., Cook, A. G., Auret, K. A., Jenkins, T. M., Thomas, G., & Aoun, S. M. (2023) · Brain Sciences · doi:10.3390/brainsci13060920 · Cited by 13
Self-citationCaga, J., Kiernan, M., & Piguet, O. (2021) · Journal of Geriatric Psychiatry and Neurology · doi:10.1177/08919887211060016 · Cited by 11
Wade, R., Pachana, N. A., & Dissanayaka, N. N. (2018) · Clinical Gerontologist · doi:10.1080/07317115.2018.1539424 · Cited by 13
Briscoe, S., Pintado, C. M., Sutcliffe, K., Meléndez‐Torres, G. J., Garside, R., Lawal, H., Orr, N., Shaw, L., & Coon, J. T. (2025) · Orphanet Journal of Rare Diseases · doi:10.1186/s13023-025-03818-w · Cited by 12
“PwRD and carers also reported specific information needs relating to treatment plans [115, 116], prognosis [115, 116] and caring skills [140].”
InfluentialMansell, S. K., Kilbride, C., Wood, M. J., Gowing, F., & Mandal, S. (2020) · BMJ Open Respiratory Research · doi:10.1136/bmjresp-2019-000510 · Cited by 15
Flexibility to manage and enhance quality of life among people with motor neurone disease
Ando, H., Cousins, R., & Young, C. A. (2020) · Disability and Rehabilitation · doi:10.1080/09638288.2020.1846797 · Cited by 12
“[92,93], and the findings of the current study should be consid-”
BackgroundBužgová, R., Kozáková, R., & Juríčková, Ľ. (2019) · PLoS ONE · doi:10.1371/journal.pone.0214395 · Cited by 10
Eltaybani, S., Yasaka, T., Fukui, C., Inagaki, A., Takaoka, M., Suzuki, H., Maruyama, M., Igarashi, A., Noguchi‐Watanabe, M., Sakka, M., et al. (2022) · Nursing Forum · doi:10.1111/nuf.12768 · Cited by 10
Cafarella, P. A., Effing, T., & Chur-Hansen, A. (2022) · Palliative & Supportive Care · doi:10.1017/s1478951522000311 · Cited by 6
Lisiecka, D., Kearns, Á., & Bonass, A. (2022) · International Journal of Language & Communication Disorders · doi:10.1111/1460-6984.12726 · Cited by 8
“The impact of caregiving can cause significant psychological distress in FCs of people with progressive neurological conditions (Aoun et al., 2013; Galvin et al., 2018;McCabe et al., 2009) and cancer (Kim&Schulz, 2008; Longacre et al.”
BackgroundPoppe, C. J., Verwey, M., & Wangmo, T. (2021) · Health & Social Care in the Community · doi:10.1111/hsc.13625 · Cited by 8
Tibell, L. H., Alvariza, A., Kreicbergs, U. C., Wallin, V. B., Steineck, G., & Holm, M. (2022) · Palliative & Supportive Care · doi:10.1017/s1478951522001602 · Cited by 8
“…to pay attention to and care for their own health, often resulting in increased risk for somatic symptoms, anxiety, depression, and work-related and financial problem (Aoun et al. 2013; Harris et al. 2018; Hudson et al. 2011), as well as social isolation (Harris et al. 2018; Hudson et al. 2011).”
Family Caregiver Suffering in Caring for Patients with Amyotrophic Lateral Sclerosis in Korea
Oh, J., Kim, J.-A., & Chu, M. S. (2021) · International Journal of Environmental Research and Public Health · doi:10.3390/ijerph18094937 · Cited by 8
“Previous studies have extensively noted the high burden and low quality of life (QOL) of ALS family caregivers [2,3].”
BackgroundCaregivers of Persons with Diverse Health Conditions: Demographics and Burden of Care
Zauszniewski, J. A., Lekhak, N., Herbell, K., & Badr, H. (2020) · Western Journal of Nursing Research · doi:10.1177/0193945920948469 · Cited by 9
“…there have been many studies on caregiver burden (e.g., dementia caregivers: Chiao et al., 2015; caregivers of motor neuron disease/ palliative care: Aoun et al., 2013), but none of them have examined demographic differences among caregivers caring for individuals with different health conditions.”
BackgroundPsychosocial Intervention for Family Caregivers of ALS Patients: A Systematic Review
Katz, L., & Gur, A. (2024) · Healthcare · doi:10.3390/healthcare12121171 · Cited by 7
“However, they propose a shift in focus toward the development of interventions that offer direct practical and psychosocial support for these caregivers [5].”
BackgroundSoikkeli‐Jalonen, A., Mishina, K. E., Virtanen, H., Andreas, C., & Haavisto, E. (2022) · European Journal of Oncology Nursing · doi:10.1016/j.ejon.2022.102201 · Cited by 7
Pinto, C., Geraghty, A. W. A., Pagnini, F., Yardley, L., & Dennison, L. (2023) · Frontiers in Psychiatry · doi:10.3389/fpsyt.2023.1083196 · Cited by 7
Barker, T. H., Holland, G., Schubert, C., Pollock, D., Stern, C., Shrestha, N., Wiercioch, W., Karam, S. G., Vucic, S., Beasley‐Hall, J., et al. (2025) · Clinical and Public Health Guidelines · doi:10.1002/gin2.70039 · Cited by 6
Harris, D., Jack, K., & Wibberley, C. (2019) · International Journal of Palliative Nursing · doi:10.12968/ijpn.2019.25.6.284 · Cited by 6
“Other study findings have suggested that family caring is a relentless commitment (Aoun et al., 2013), resulting in multiple losses (Oliver and Aoun, 2013).”
BackgroundWilson, E., Palmer, J., Kaltsakas, G., Lee, J.-S., & Faull, C. (2025) · Palliative Medicine · doi:10.1177/02692163251327866 · Cited by 5
“3 Findings in this paper focus on data from interviews with bereaved family members.”
Wood-Allum, C. A. (2014) · Journal of Palliative Care · doi:10.1177/082585971403000412 · Cited by 5
“The existing MND palliative care literature is well reviewed elsewhere (5, 6).”
BackgroundSołtys, A., & Wnuk, M. (2025) · Journal of Clinical Medicine · doi:10.3390/jcm14145134 · Cited by 5
“Furthermore, chronic role overload, insufficient personal time, and persistent fatigue contribute to a growing sense of anxiety and insecurity, which may ultimately hinder the effectiveness of caregiving [36,38,61–63].”
Gomes, C. M. S., Zuqui, A. C., Schiavo, K. V., & de Oliveira, J. F. P. (2021) · Acta Fisiátrica · doi:10.11606/issn.2317-0190.v27i3a172216 · Cited by 5
Glennie, N., Harris, F., & France, E. F. (2022) · Disability and Rehabilitation · doi:10.1080/09638288.2022.2104942 · Cited by 5
The Impact of Rapidly Progressing Neurodegenerative Disorders on Caregivers
Mossa, A., Mayahara, M. P., Emezue, C., & Paun, O. (2023) · Journal of Hospice and Palliative Nursing · doi:10.1097/njh.0000000000000997 · Cited by 5
Genuis, S. K., Luth, W., Magnussen, C., Velde, C. V., Taylor, D., CAPTURE ALS Participant Partner Advisory Council, & Johnston, W. S. (2024) · Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration · doi:10.1080/21678421.2024.2328599 · Cited by 6
“We accommodated the uncertainty of the disease trajectory (54), augmentative and alternative communication aids (55), life commitments and caregiving responsibilities (56, 57), a geographically dispersed population, and Canada ’ s two official languages.”
Hogden, A., Aoun, S. M., & Silbert, P. L. (2018) · EMJ Neurology · doi:10.33590/emjneurol/10310407 · Cited by 6
Self-citationThe impact of cognitive decline in amyotrophic lateral sclerosis on swallowing. A scoping review
Francis, R. L., Attrill, S., & Doeltgen, S. (2021) · International Journal of Speech-Language Pathology · doi:10.1080/17549507.2021.1894235 · Cited by 5
“Impaired oropharyngeal swallowing in ALS increases the risk of malnutrition, dehydration, and aspiration (Ruoppolo et al., 2013), negatively affects quality of life (Vesey, 2017) and increases caregiver burden (Aoun et al., 2013; Geng et al., 2017; Ng, Talman, & Khan, 2011).”
BackgroundBailey, D. E., Muir, A. J., Cary, M. P., Ammarell, N., Seaver, S., Scirica, E., Mah’moud, M., & Anderson, R. A. (2021) · Nursing Science Quarterly · doi:10.1177/08943184211031602 · Cited by 5
“On the other hand, adaptive challenges are complex in nature, are easy to deny, and require a family member and/or the patient to adapt, learn, or change their behavior in some fashion (Aoun et al., 2012; Bailey et al., 2012; Thygeson, 2013).”
BackgroundProtocol for the Development of The Australian Motor Neurone Disease (MND) Guideline
Stern, C., Pollock, D., Barker, T. H., McBride, G. M., Hasanoff, S., Shrestha, N., Semendric, I., Bulto, L. N., Sharma, S., Fragkoudi, A., et al. (2025) · Clinical and Public Health Guidelines · doi:10.1002/gin2.70055 · Cited by 4
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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