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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There is a need for psychosocial interventions for caregivers, but such interventions are still lacking.
“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]
The Implications for service provision section says that evidence of distress among MND family caregivers is rarely translated into interventions and that no studies had assessed direct supports and outcomes for them. This supports the need and gap for MND caregivers, but the cited paper does not establish the claim for caregivers generally. (LLM, conf=0.85)
Experimental — accuracy not yet measuredPrevious research on ALS caregiving revealed increasing levels of psychological distress in caregivers, a lack of existing interventions and an urgent need for support.
“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].”
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 [9]
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 [9]
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“A comprehensive review of the literature revealed that the experience of diagnosis, assisted ventilation, cognitive changes, and end-of-life decision-making create challenges within a short time for MND caregivers, underscoring the need for supportive interventions.(3) People with MND and their families often describe…”
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Aoun, S. M., Breen, L. J., Edis, R. H., Henderson, R. D., Oliver, D., Harris, R., Howting, D. A., O’Connor, M., & Birks, C. (2016) · Journal of the Neurological Sciences · doi:10.1016/j.jns.2016.06.033 · Cited by 60 · see citing works
“Receiving a diagnosis of MND is a challenge and a source of dissatisfaction for patients and their families [1-4].”
Self-citationExperiences of caring for a family member with Parkinson's disease: a meta-synthesis
Theed, R., Eccles, F. J. R., & Simpson, J. (2016) · Aging & Mental Health · doi:10.1080/13607863.2016.1247414 · Cited by 56 · see citing works
Cipolletta, S., Gammino, G. R., Francescon, P., & Palmieri, A. (2018) · Health and Social Care in the community · doi:10.1111/hsc.12558 · Cited by 49 · see citing works
“…a life different from the one they had before—especially the husband caregivers—and they accused the healthcare system of not providing enough information or helping them prepare to manage this disease, as previous studies have already pointed out (Aoun et al., 2013; Cipolletta & Amicucci, 2015).”
Pagnini, F., Phillips, D., Bosma, C. M., Reece, A., & Langer, E. (2016) · Journal of Clinical Psychology · doi:10.1002/jclp.22235 · Cited by 54 · see citing works
Aoun, S. M., Deas, K., Kristjanson, L. J., & Kissane, D. W. (2016) · Palliative & Supportive Care · doi:10.1017/s1478951516000341 · Cited by 53 · see citing works
“Communication issues are particularly important for people with MND and their family caregivers (Ol-iver & Aoun, 2013; Aoun et al., 2014) compared to most other life-limiting diseases.”
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 · see citing works
“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].”
BackgroundSelf-citationThe Caregiver Role in Palliative Care: A Systematic Review of the Literature
Reigada, C., Ribeiro, J. L. P., Anna Novella, S., & Gonçalves, E. (2015) · Health Care Current Reviews · doi:10.4172/2375-4273.1000143 · Cited by 50 · see citing works
“Four studies did not specify the setting of care where the patient was during the data collection [9,13,16,17,20-22], and four did not make reference to the fact that the patient was followed or not by a PC team.”
BackgroundFlemming, K., Turner, V., Bolsher, S., Hulme, B., McHugh, E., & Watt, I. S. (2020) · Palliative Medicine · doi:10.1177/0269216320908775 · Cited by 48 · see citing works
Gaugler, J. E., Potter, T., & Pruinelli, L. (2014) · Clinics in Geriatric Medicine · doi:10.1016/j.cger.2014.04.003 · Cited by 47 · see citing works
Receiving the news of a diagnosis of motor neuron disease: What does it take to make it better?
Aoun, S. M., Breen, L. J., Howting, D. A., Edis, R. H., Oliver, D., Henderson, R. D., O’Connor, M., Harris, R., & Birks, C. (2015) · Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration · doi:10.3109/21678421.2015.1111907 · Cited by 48 · see citing works
Self-citationDe Wit, J., Beelen, A., Drossaert, C. H. C., Kolijn, R., Van Den Berg, L. H., SchrÖder, C. D., & Visser-Meily, J. M. A. (2020) · Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration · doi:10.1080/21678421.2020.1757114 · Cited by 46 · see citing works
Pinto, C., Geraghty, A. W. A., Yardley, L., & Dennison, L. (2021) · BMJ Open · doi:10.1136/bmjopen-2020-044724 · Cited by 40 · see citing works
Factors related to caregiver strain in ALS: a longitudinal study
Creemers, H., de Morée, S., Veldink, J. H., Nollet, F., van den Berg, L. H., & Beelen, A. (2016) · Journal of Neurology, Neurosurgery & Psychiatry · doi:10.1136/jnnp-2015-311651 · Cited by 52 · see citing works
Bowers, S. P., Chin, M., O’Riordan, M., & Carduff, E. (2022) · BMC Palliative Care · doi:10.1186/s12904-022-01080-6 · Cited by 43 · see citing works
“Patients living in poverty felt a negative bias and stigmatization from healthcare professionals towards them due to their lower socioeconomic class and this impacted on perception of the care received [79].”
BackgroundSupport needs of caregivers of patients with amyotrophic lateral sclerosis: A qualitative study
de Wit, J., Schröder, C. D., el Mecky, J., Beelen, A., van den Berg, L. H., & Visser‐Meily, J. M. A. (2018) · Palliative & Supportive Care · doi:10.1017/s1478951517001213 · Cited by 40 · see citing works
“Despite the awareness of the decreased physical and mental health of caregivers and the importance of family support in comprehensive ALS patient care, evidence-based supportive interventions for caregivers are lacking (Aoun et al., 2013).”
Background“I hate being a burden”: The patient perspective on carer burden in amyotrophic lateral sclerosis
Foley, G., Timonen, V., & Hardiman, O. M. (2016) · Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration · doi:10.3109/21678421.2016.1143512 · Cited by 39 · see citing works
“Family carers in ALS encounter caregiver burden (3,4) and caregiver burden can have an adverse effect on their well-being (5).”
BackgroundAoun, S. M., Breen, L. J., Oliver, D., Henderson, R. D., Edis, R. H., O’Connor, M., Howting, D. A., Harris, R., & Birks, C. (2016) · Journal of the Neurological Sciences · doi:10.1016/j.jns.2016.11.043 · Cited by 37 · see citing works
“Receiving a diagnosis of MND is recognised as a central challenge for MND patients and their families [6].”
Self-citationde Wit, J., Vervoort, S. C. J. M., van Eerden, E., van den Berg, L. H., Visser-Meily, J. M. A., Beelen, A., & Schröder, C. D. (2019) · BMC Psychology · doi:10.1186/s40359-019-0308-x · Cited by 37 · see citing works
“Although caregivers express a need for psychosocial support [6] supportive evidence based interventions for these caregivers are lacking [7].”
BackgroundSteinhauser, K. E., Olsen, A., Johnson, K. S., Sanders, L. L., Olsen, M. K., Ammarell, N., & Grossoehme, D. H. (2015) · Palliative & Supportive Care · doi:10.1017/s1478951515001248 · Cited by 38 · see citing works
“With its rapid disease progression, 50% mortality within 3 years of symptom onset, and frequent devastating functional changes in terms of movement, breathing, eating, speech, and cognitive capacity, research has demonstrated that ALS caregivers experience increased stress, burden, and changes in quality of life (Aoun…”
BackgroundGalvin, M., Gaffney, R., Corr, B., Mays, I., & Hardiman, O. M. (2017) · BMJ Open · doi:10.1136/bmjopen-2016-014985 · Cited by 37 · see citing works
The burden of apathy for caregivers of patients with amyotrophic lateral sclerosis
Caga, J., Hsieh, S., Highton‐Williamson, E., Zoing, M. C., Ramsey, E., Devenney, E. M., Ahmed, R. M., Hogden, A., & Kiernan, M. C. (2018) · Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration · doi:10.1080/21678421.2018.1497659 · Cited by 37 · see citing works
“as an important aspect of contemporary ALS patient care (17,18).”
BackgroundDecision-making among patients and their family in ALS care: a review
Foley, G., & Hynes, G. (2017) · Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration · doi:10.1080/21678421.2017.1353099 · Cited by 36 · see citing works
“In ALS, we know that family caregivers encounter carer burden (6) and that patients depend on family for care (7,8).”
BackgroundHarris, M., Thomas, G., Thomas, M., Cafarella, P., Stocks, A., Greig, J., & McEvoy, R. D. (2017) · Palliative & Supportive Care · doi:10.1017/s1478951517000700 · Cited by 35 · see citing works
“Two other reviews suggested that psychosocial interventions could benefit both partners (Aoun et al., 2013; Pagnini, 2013).”
BackgroundInfluentialExperience of telehealth in people with motor neurone disease using noninvasive ventilation
Ando, H., Ashcroft-Kelso, H., Halhead, R., Chakrabarti, B., Young, C. A., Cousins, R., & Angus, R. (2019) · Disability and Rehabilitation Assistive Technology · doi:10.1080/17483107.2019.1659864 · Cited by 34 · see citing works
“experience great burdens due to the illness [31], and thus a sep-”
BackgroundLerum, S. V., Solbrække, K. N., & Frich, J. C. (2016) · BMC Palliative Care · doi:10.1186/s12904-016-0097-4 · Cited by 33 · see citing works
“Caregivers may feel they have responsibility for the survival of the person with MND [10] and some per-”
BackgroundInfluentialMoving Beyond Caregiver Burden: Identifying Helpful Interventions for Family Caregivers
Sorrell, J. M. (2014) · Journal of Psychosocial Nursing and Mental Health Services · doi:10.3928/02793695-20140128-05 · Cited by 33 · see citing works
Namasivayam-MacDonald, A. M., & Shune, S. (2019) · Geriatric Nursing · doi:10.1016/j.gerinurse.2019.06.008 · Cited by 32 · see citing works
Aoun, S. M., Kissane, D. W., Cafarella, P., Rumbold, B. D., Hogden, A., Jiang, L., & Bear, N. (2020) · Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration · doi:10.1080/21678421.2020.1790610 · Cited by 31 · see citing works
Self-citationConroy, É., Kennedy, P., Heverin, M., Leroi, I., Mayberry, E. J., Beelen, A., Stavroulakis, T., van den Berg, L. H., McDermott, C. J., Hardiman, O. M., et al. (2021) · Brain Sciences · doi:10.3390/brainsci11081094 · Cited by 31 · see citing works
“Caring for someone with ALS affects the physical, psychological, and emotional wellbeing of the caregiver [7,8].”
BackgroundPinto, C., Geraghty, A. W. A., McLoughlin, C., Pagnini, F., Yardley, L., & Dennison, L. (2022) · Health Psychology Review · doi:10.1080/17437199.2022.2073901 · Cited by 30 · see citing works
“Caregivers also experience burden, depression and anxiety (Aoun et al., 2013; Iavarone et al., 2014; Martínez-Martín et al., 2007) which is sometimes related to the disease severity and neuropsychiatric symptoms experienced by the person with the neuro-degenerative condition (Allegri et al., 2006;…”
Poppe, C. J., Koné, I., Iseli, L. M., Schweikert, K., Elger, B. S., & Wangmo, T. (2020) · Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration · doi:10.1080/21678421.2020.1771735 · Cited by 27 · see citing works
Oh, J., & Kim, J. A. (2017) · Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration · doi:10.1080/21678421.2017.1385636 · Cited by 27 · see citing works
“Family caregivers for those with amyotrophic lateral sclerosis (ALS) have experienced exceptional stress and difficulties (1).”
BackgroundResultInfluentialAnderson, N. H., Gluyas, C., Mathers, S., Hudson, P., & Ugalde, A. (2016) · BMJ Supportive & Palliative Care · doi:10.1136/bmjspcare-2015-001057 · Cited by 26 · see citing works
O’Dwyer, S., Moyle, W., Pachana, N. A., Sung, B., & Barrett, S. (2014) · Maturitas · doi:10.1016/j.maturitas.2014.01.013 · Cited by 26 · see citing works
“This type of care provision is known to lead to high rates of depression, anxiety, hopelessness and poor physical health, and these effects have been reported in a range of caregiving contexts, including cancer, mental illness, and neurodegenerative disorders [4–8].”
BackgroundLisiecka, D., Kelly, H., & Jackson, J. (2020) · Palliative Medicine · doi:10.1177/0269216320932754 · Cited by 24 · see citing works
Aoun, S., Cafarella, P. A., Rumbold, B., Thomas, G., Hogden, A., Jiang, L., Gregory, S., & Kissane, D. (2020) · Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration · doi:10.1080/21678421.2020.1813780 · Cited by 24 · see citing works
“Psychological sequelae such as anxiety and depression are already linked with MND caregiving (4,6) and symptoms are associated with patient behavioral changes (7,8).”
BackgroundSelf-citationDepression and Caregiving Burden in Families of Patients with Amyotrophic Lateral Sclerosis
Oh, J., An, J. W., Oh, K., Oh, S., Kim, J. A., Kim, S. H., & Lee, J. S. (2015) · Journal of Korean Academy of Nursing · doi:10.4040/jkan.2015.45.2.202 · Cited by 23 · see citing works
Lerum, S. V., Solbrække, K. N., & Frich, J. C. (2017) · Health & Social Care in the Community · doi:10.1111/hsc.12432 · Cited by 22 · see citing works
“Family caregivers for people with MND may experience exceptional strain and overwhelming amounts of care work (Aoun et al. 2013, Sakellariou et al. 2013, Lerum et al. 2016).”
BackgroundBurns, E., Quinn, S., Abernethy, A., & Currow, D. (2015) · Journal of Pain and Symptom Management · doi:10.1016/j.jpainsymman.2015.04.017 · Cited by 18 · see citing works
The experience of informal caregivers of patients with motor neurone disease: A thematic synthesis
Holkham, L., & Soundy, A. (2017) · Palliative & Supportive Care · doi:10.1017/s1478951517000852 · Cited by 21 · see citing works
Ugalde, A., Mathers, S., Anderson, N. H., Hudson, P., Orellana, L., & Gluyas, C. (2017) · Palliative Medicine · doi:10.1177/0269216317743434 · Cited by 21 · see citing works
Ninfa, A., Crispiatico, V., Pizzorni, N., Bassi, M., Casazza, G., Schindler, A., & Fave, A. D. (2021) · PLoS ONE · doi:10.1371/journal.pone.0257683 · Cited by 21 · see citing works
Olesen, L. K., la Cour, K., With, H., & Handberg, C. (2022) · Palliative Care and Social Practice · doi:10.1177/26323524221077702 · Cited by 21 · see citing works
Soikkeli‐Jalonen, A., Mishina, K. E., Virtanen, H., Charalambous, A., & Haavisto, E. (2021) · Journal of Clinical Nursing · doi:10.1111/jocn.15725 · Cited by 19 · see citing works
“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…”
BackgroundParker, D., Hudson, P., Tieman, J., Thomas, K., Saward, D., & Ivynian, S. E. (2021) · Australian Journal of Primary Health · doi:10.1071/py21019 · Cited by 19 · see citing works
Caregiving, Transport-Related, and Demographic Correlates of Sedentary Behavior in Older Adults
White, M. N., King, A. C., Sallis, J. F., Frank, L. D., Saelens, B. E., Conway, T. L., Cain, K. L., & Kerr, J. (2015) · Journal of Aging and Health · doi:10.1177/0898264315611668 · Cited by 19 · see citing works
“Caregiving can negatively affect the physical, psychological, and social well-being of the caregiver (Aoun et al., 2013; Covinsky et al., 2003; Etters, Goodall, & Harrison, 2008; Grant et al., 2013; Mosher, Bakas, & Champion, 2013; Romito, Goldzweig, Cormio, Hagedoorn, & Andersen, 2013; Schulz et al., 2009; Van Durme,…”
The End-of-Life Experiences of People with Motor Neuron Disease: Family Carers' Perspectives
Bentley, B., & O’Connor, M. (2016) · Journal of Palliative Medicine · doi:10.1089/jpm.2015.0538 · Cited by 18 · see citing works
“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…”
Self-citationRecommendations to support informal carers of people living with motor neurone disease
Bergin, S., & Mockford, C. (2016) · British Journal of Community Nursing · doi:10.12968/bjcn.2016.21.10.518 · Cited by 18 · see citing works
Kavanaugh, M. S., Cho, Y. S., Fee, D. B., & Barkhaus, P. E. (2020) · Neurodegenerative Disease Management · doi:10.2217/nmt-2020-0004 · Cited by 17 · see citing works
The Moderating Effects of Personal Resources on Caregiver Burden in Carers of Alzheimer's Patients
Sołtys, A., Bidzan, M., & Tyburski, E. M. (2021) · Frontiers in Psychiatry · doi:10.3389/fpsyt.2021.772050 · Cited by 17 · see citing works
“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).”
BackgroundAre Amyotrophic Lateral Sclerosis Caregivers at Higher Risk for Health Problems?
Pinho, A. C., & Gonçalves, E. (2016) · Acta Médica Portuguesa · doi:10.20344/amp.6590 · Cited by 17 · see citing works
Gluyas, C., Mathers, S., Anderson, N. H., & Ugalde, A. (2016) · Palliative & Supportive Care · doi:10.1017/s1478951516000912 · Cited by 17 · see citing works
“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).”
BackgroundLinse, K., Aust, E., Günther, R., & Hermann, A. (2022) · Journal of Clinical Medicine · doi:10.3390/jcm11010254 · Cited by 16 · see citing works
Kolomeytseva, A. T. A., Brylev, L., Eshghi, M., Bottaeva, Z., Zhang, J., Fachner, J. C., & Street, A. J. (2022) · Brain Sciences · doi:10.3390/brainsci12040494 · Cited by 16 · see citing works
“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].”
BackgroundDomínguez‐Berjón, M. F., Esteban-Vasallo, M. D., Zoni, A. C., Gènova-Maleras, R., & Astray‐Mochales, J. (2015) · Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration · doi:10.3109/21678421.2015.1089908 · Cited by 16 · see citing works
“There is, however, evidence that the caregiver’s burden increases as the disease worsens and becomes very onerous with dying patients (27).”
BackgroundEwing, G., Croke, S., Rowland, C., & Grande, G. (2020) · BMJ Open · doi:10.1136/bmjopen-2020-039031 · Cited by 14 · see citing works
Self-citationHogden, A. (2014) · Neurodegenerative Disease Management · doi:10.2217/nmt.13.71 · Cited by 15 · see citing works
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 · see citing works
“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 · see citing works
Trucco, A., Backhouse, T., Mioshi, E., & Kishita, N. (2023) · Death Studies · doi:10.1080/07481187.2023.2191351 · Cited by 12 · see citing works
“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 · see citing works
Self-citationCaga, J., Kiernan, M., & Piguet, O. (2021) · Journal of Geriatric Psychiatry and Neurology · doi:10.1177/08919887211060016 · Cited by 11 · see citing works
Wade, R., Pachana, N. A., & Dissanayaka, N. N. (2018) · Clinical Gerontologist · doi:10.1080/07317115.2018.1539424 · Cited by 13 · see citing works
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 · see citing works
“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 11 · see citing works
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 10 · see citing works
“[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 · see citing works
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 9 · see citing works
Cafarella, P. A., Effing, T., & Chur-Hansen, A. (2022) · Palliative & Supportive Care · doi:10.1017/s1478951522000311 · Cited by 6 · see citing works
Lisiecka, D., Kearns, Á., & Bonass, A. (2022) · International Journal of Language & Communication Disorders · doi:10.1111/1460-6984.12726 · Cited by 8 · see citing works
“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 · see citing works
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 · see citing works
“…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 · see citing works
“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 · see citing works
“…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 · see citing works
“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 · see citing works
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 · see citing works
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 · see citing works
Harris, D., Jack, K., & Wibberley, C. (2019) · International Journal of Palliative Nursing · doi:10.12968/ijpn.2019.25.6.284 · Cited by 6 · see citing works
“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 · see citing works
“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 · see citing works
“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 · see citing works
“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 · see citing works
Glennie, N., Harris, F., & France, E. F. (2022) · Disability and Rehabilitation · doi:10.1080/09638288.2022.2104942 · Cited by 5 · see citing works
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 · see citing works
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 · see citing works
“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 · see citing works
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 · see citing works
“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 · see citing works
“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 · see citing works
- 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 › Health Professions › Pharmacy › Nursing care and research
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative Care and End-of-Life Issues
- Health Sciences › Medicine › 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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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.
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