Ando H, Cousins R, Young CA. Exploring and addressing ‘concerns’ for significant others to extend the understanding of quality of life with amyotrophic lateral sclerosis: a qualitative study. J Cent Nerv Syst Dis. 2019; 11

Ang K, Umapathi T, Tong J Healthcare Needs of Patients with Amyotrophic Lateral Sclerosis (ALS) in Singapore: a patient-centred qualitative study from multiple perspectives. J Palliat Care. 2015; 31:(3)150-157

Aoun SM, Connors SL, Priddis L, Breen LJ, Colyer S. Motor neurone disease family carers' experiences of caring, palliative care and bereavement: an exploratory qualitative study. Palliat Med. 2012; 26:(6)842-850

Aoun SM, Breen LJ, Oliver D Family carers' experiences of receiving the news of a diagnosis of motor neurone disease: a national survey. J Neurol Sci. 2016; 372:144-151

Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol. 2006; 3:(2)77-101

Burchill E, Rawji V, Styles K When months matter; modelling the impact of the COVID-19 pandemic on the diagnostic pathway of Motor Neurone Disease (MND). Neurology. 2020;

Caga J, Ramsey E, Hogden A Motor neurone disease: an issue of neurologic clinics. Amyotroph Lateral Scler Frontotemporal Degener. 2015a; 13:(4)1019-1024

Caga J, Ramsey E, Hogden A, Mioshi E, Kiernan MC. A longer diagnostic interval is a risk for depression in amyotrophic lateral sclerosis. Palliat Support Care. 2015b; 13:(4)1019-1024

Chiò A, Gauthier A, Calvo A Caregiver burden and patients' perception of being a burden in ALS. Neurology. 2005; 64:(10)1780-1782

Measuring what really matters. Towards a coherent measurement system to support person-centred care. 2014. (accessed 17 March 2021)

Connolly S, Galvin M, Hardiman O. End-of-life management in patients with amyotrophic lateral sclerosis. Lancet Neurol. 2015; 14:(4)435-442

Dillon J, Wals EJ. On the danger of blurring methodologies and ideologies in environmental education. Research. 2006; 12:(3–4)

Andersen PM, Abrahams S, Borasio GD EFNS guidelines on the clinical management of amyotrophic lateral sclerosis (MALS)—revised report of an EFNS task force. Eur J Neurol. 2012; 19:(3)360-375

Elo S, Kaariainen M, Kanste O Qualitative content analysis: a focus on trustworthiness. SAGE Open. 2014; 4:(1)

European Network for the Cure of ALS. Recommendations to patients and caregivers. 2020. (accessed 22 March 2022)

Foley G, Hynes G. Decision-making among patients and their family in ALS care: a review. Amyotroph Lateral Scler Frontotemporal Degener. 2018; 19:(3–4)173-193

Foley G, O'Mahony P, Hardiman O. Perceptions of quality of life in people with ALS: effects of coping and healthcare. Amyotroph Lateral Scler Other Motor Neuron Disord. 2007; 8:(3)164-169

Foley G, Timonen V, Hardiman O. Patients' perceptions and preferences for care in amyotrophic lateral sclerosis: a review. Amyotrophic Lateral Sclerosis. 2012; 13:11-24

Foley G, Timonen V, Hardiman O Acceptance and decision making in amyotrophic lateral sclerosis from a lifecourse perspective. Qual Health Res. 2014; 24:(1)67-77

Frith H, Gleeson K. Clothing and embodiment: men managing body image and appearance. Psychol Men Masc. 2004; 5:(1)40-48

Galvin M, Madden C, Maguire S Patient journey to a specialist amyotrophic lateral sclerosis multidisciplinary clinic: an exploratory study. BMC Health Serv Res. 2015; 15

Gauthier A, Vignola A, Calvo A A longitudinal study on quality of life and depression in ALS patient–caregiver couples. Neurology. 2007; 68:(12)923-926

Glasmacher SA, Larraz J, Mehta AR The immediate impact of the COVID-19 pandemic on motor neurone disease services and mortality in Scotland. J Neurol. 2021; 268:(6)2038-2040

Hardiman O. Multidisciplinary care in ALS: Expanding the team. Amyotroph Lateral Scler. 2012; 13:(2)

Hawker S, Payne S, Kerr C, Hardey M, Powell J. Appraising the evidence: reviewing disparate data systematically. Qual Health Res. 2002; 12:(9)1284-1299

Hobson EV, Baird WO, Bradburn M Using telehealth in motor neurone disease to increase access to specialist multidisciplinary care: a UK-based pilot and feasibility study. BMJ Open. 2019; 9

Hogden A, Foley G, Henderson RD Amyotrophic lateral sclerosis: improving care with a multidisciplinary approach. J Multidiscip Healthc. 2017; 10:205-215

Hogden A, Paynter C, Hutchinson K. How can we improve patient-centreed care of motor neuron condition?. Neurodegenerative Condition Management. 2020; 10:(2)95-101

Holmes T. Motor neurone disease and the NSF for long-term neurological conditions. Prim Healthcare. 2005; 15:(9)27-31

Howard RS, Orrell RW. Management of motor neurone disease. Postgrad Med J. 2002; 78:(926)736-741

Hughes RA, Sinha A, Higginson I Living with motor neurone disease: lives, experiences of services and suggestions for change. Health Soc Care Community. 2005; 13:(1)64-74

Ilardi A, Cammarosano S, Manera U Theme 1: multidisciplinary care and quality of life. Amyotroph Lateral Scler Frontotemporal Degener. 2013; 14:(68)2167-8421

Jellinger KA. Motor neuron disease: a practical manual. Eur J Neurol. 2010; 17:(8)e65-e65

Kiernan MC, Vucic S, Cheah BC Amyotrophic lateral sclerosis. Lancet. 2011; 377:(9769)942-955

Lerum SV, Solbraekke KN, Frich JC. Healthcare professionals' accounts of challenges in managing motor neurone condition in primary healthcare: a qualitative study. Health Soc Care Community. 2017; 25:(4)1355-1363

Liberati A, Altman DG, Tetzlaff J The PRISMA statement for reporting systematic reviews and meta-analyses of studies that evaluate healthcare interventions: explanation and elaboration. BMJ (Clin Research Ed). 2009; 339

Lillo P, Garcin B, Hornberger M Neurobehavioral features in frontotemporal dementia with amyotrophic lateral sclerosis. Arch Neurol. 2010; 67:(7)826-830

Lincoln YS, Guba EG. Naturalistic inquiry.Newbury Park, CA: Sage; 1985

Locock L, Mazanderani F, Powell J. Metaphoric language and the articulation of emotions by people affected by motor neurone condition. Chronic Illn. 2012; 8:(3)201-213

McConigley R, Kristjanson LJ, Aoun SM Staying just one step ahead: providing care for patients with motor neurone disease. BMJ Support Palliat Care. 2014; 4:(1)38-42

McNamara B, Rosenwax L. Which carers of family members at end of life need more support from health and social services and why?. Soc Sci Med. 2010; 70:(7)1035-1041

Mc Veigh C, Donaghy C, McLaughlin B Palliative care for patients with motor neurone condition and their bereaved carers: a qualitative study. BMC Palliat Care. 2019; 18:(1)

Mistry K, Simpson J. Exploring the transitional process from receiving a diagnosis to living with motor neurone condition. Psychol Health. 2013; 28:(8)939-953

Mitchell JD, Borasio GD. Amyotrophic lateral sclerosis. Lancet. 2007; 369:(9578)2031-41

Murray L, Butow PN, White K Advance care planning in motor neuron disease: A qualitative study of caregiver perspectives. Palliat Med. 2016; 30:(5)471-8

National Institute for Health and Care Excellence. Motor neurone disease: assessment and management [NG42]. 2016. (accessed 17 March 2022)

Ng L, Khan F, Mathers S. Multidisciplinary care for adults with amyotrophic lateral sclerosis or motor neuron disease. Cochrane Database Syst Rev. 2009; 4

Noble H, Smith J. Issues of validity and reliability in qualitative research. Evid Based Nurs. 2015; 18:(2)34-35

O'Brien D, Stavroulakis T, Baxter S The optimisation of noninvasive ventilation in amyotrophic lateral sclerosis: a systematic review. Eur Respir J Suppl. 2019; 54:(3)

O'Brien M, Whitehead B, Jack B, Mitchell JD. Multidisciplinary team working in Motor Neurone disease: patient and family carer view. Br J Neurosci Nurs. 2011; 7:(4)580-585

O'Brien MR, Whitehead B, Murphy PN Social services homecare for people with motor neurone condition/amyotrophic lateral sclerosis: why are such services used or refused. Palliat Med. 2012; 26:(2)123-131

O'Brien MR. Healthcare professionals' knowledge of motor neurone disease. Br J Nurs. 2004a; 13:(18)1080-1084

O'Brien MR. Information-seeking behaviour among people with motor neurone disease. Br J Nurs. 2004b; 13:(16)964-968

O'Connor M, Aoun SM, Breen LJ Family carers' experiences of receiving the news of a diagnosis of Motor neurone disease: national survey. J Neurol Sci. 2017; 372:144-151

Oliver DJ, Baker I, Faull C Motor neurone disease specialist palliative care: impact of COVID-19 pandemic. BMJ Support Palliat Care. 2021;

Oyebode JR, Smith HJ, Morrison K. The personal experience of partners of individuals with motor neuron condition. Amyotroph Lateral Scler Frontotemporal Degener. 2013; 14:(1)39-43

Ozanne OA, Graneheim HU, Persson L, Strang S. Factors that facilitate and hinder the manageability of living with amyotrophic lateral sclerosis in both patients and next of kin. J Clin Nurs. 2011; 21:(9–10)1364-1373

Patton MQ. Qualitative evaluation and research methods, 2nd edn. Newbury Park (CA): Sage; 1990

Phukan J, Elamin M, Bede P The syndrome of cognitive impairment in amyotrophic lateral sclerosis: a population-based study. J Neurol Neurosurg Psychiatry. 2012; 83:(1)102-108

Ray RA, Street AF. Caregiver bodywork: family members' experiences of caring for a person with motor neurone disease. J Adv Nurs. 2006; 56:(1)35-43

Riemenschneider KA, Forshew DA, Miller RG. Multidisciplinary clinics: optimising treatment for patients with amyotrophic lateral sclerosis. Neurodegenerative Condition Management. 2013; 3:(2)157-167

Sakellariou D, Boniface G, Brown P. Experiences of living with motor neurone condition: a review of qualitative research. Disabil Rehabil. 2013; 35:(21)1765-1773

Seeber AA, Pols AJ, Hijdra A Experiences and reflections of patients with motor neuron condition on breaking the news in a two-tiered appointment: a qualitative study. BMJ Support Palliat Care. 2019; 9:(1)

Shenton AK. Strategies for ensuring trustworthiness in qualitative research projects. Education for Information. 2004; 22:(2)63-75

Skelton J. Nursing role in the multidisciplinary management of motor neurone disease. Br J Nurs. 2005; 14:(1)20-24

Ushikubo M, Suzuki S. Respite care services for patients with amyotrophic lateral sclerosis and their families from the perspective of home care nurses. Home Health Care Manag Pract. 2016; 28:(1)44-50

van Teijlingen ER, Friend E, Kamal AD. Service use and needs of people with motor neurone condition and their carers in Scotland. Health Soc Care Community. 2001; 9:(6)397-403

Vibert S. MND costs: exploring the financial impact of motor neurone disease.London: Demos; 2017

Whitehead B, O'Brien MR, Jack BA Experiences of dying, death and bereavement in motor neurone disease: a qualitative study. Palliat Med. 2011; 26:(4)368-378

Wijeskera L, Leigh PN. Amyotrophic lateral sclerosis. Orphanet Journal of Rare Conditions. 2009; 4:(3)

Models of care in motor neurone disease: final report to the Motor Neurone Disease Association. 2016. (accessed 17 March 2022)

Perceptions of people with motor neurone disease, families and HSCPs: a literature review

02 April 2022
29 min read
Volume 27 · Issue 4


Motor neurone disease or amyotrophic lateral sclerosis is a rapidly progressive terminal neurodegenerative condition caused by degeneration of the upper and lower motor neurones in the central nervous system of the brain. The effects of motor neurone disease are multifaceted, leading to many adjustments in everyday life. This literature review asked what the experiences of people living with motor neurone disease was before and during the COVID-19 pandemic and during the COVID-19 pandemic, especially in terms of their condition and the support they received from health and social care services. A key theme identified was lack of knowledge among professionals when they cared for people living with motor neurone disease and their families. This lack of knowledge often resulted in delayed diagnosis and poor standards of care. COVID-19 impacted on the care of people living with motor neurone disease and their families, and there is a paucity of evidence on how services were perceived by these groups during the COVID-19 pandemic. The experiences of people living with motor neurone disease and their families are currently missing in the literature. In conclusion, further studies are required to include care of people living with motor neurone disease and their families.

Motor neurone disease (MND) is a result of degeneration of the upper and lower motor neurones in the brain and spinal cord (Ilardi et al, 2013). Worldwide, MND is also known as amyotrophic lateral sclerosis (ALS), or Lou Gehrig disease. Throughout this literature review, the term MND has been used, as it is the most commonly used term to describe this disease in the UK, where this review was conducted. The rapid deterioration of the motor neurones causes impairment of muscles controlling mobility, swallowing, speech and breathing (Mitchell and Borasio, 2007; Lillo et al, 2010; Kiernan et al, 2011; Caga et al, 2015a;b). This resulting impairment of the muscles leads to swallowing difficulties (dysphagia), poor formation of words (dysarthria) or inability to form words (anarthria), paralysis of upper and lower limbs, mild frontal lobe impairment, cognitive impairment and breathing difficulties (Wijesekera and Leigh, 2009: Phukan et al, 2012).

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