Cited by 105Palliative Care and End-of-Life IssuesAmyotrophic Lateral Sclerosis ResearchPalliative and Oncologic Care

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Living with motor neurone disease: lives, experiences of services and suggestions for change

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Hughes, Rhidian A., Sinha, Anu, Higginson, Irene, Down, Keren, Leigh, P. Nigel·2005·Health and Social Care in the Community

DOI 10.1111/j.1365-2524.2005.00530.x

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Abstract

Palliative care involves the complete, holistic care of people with progressive illness and their families. People living with motor neurone disease (MND) require a range of multidisciplinary palliative care services. However, there are significant gaps in our understanding of these people's lives, experiences of services and their suggestions for service change. The present study addressed the following questions: (1) What are the lived experiences of people living with MND? (2) What are people's experiences of services? and (3) Can improvements to care be identified? A qualitative research design was adopted using semi-structured interviews. The topic guide was developed from existing literature. The study was based in three boroughs in London, UK. People living with MND and professionals were drawn from a database at King's College Hospital, and additionally, through 'snowball' sampling. Nine people with MND, five carers/family members and 15 professionals took part in the interviews. These interviews were audio-taped, transcribed and checked for accuracy against the original recordings. Themes within the interviews were coded and grouped. The analysis was facilitated with the NVIVO computer software package. The findings are presented within three substantive groups: (1) the impact of MND on people's lives (the physical impacts of the illness, including increasing disability; social issues, including restrictions on social activities; and adjustments to people's lives, including methods of coping with the illness); (2) experiences of services (accessing service entitlements, information sources, professionals' attitudes and approaches, and professionals' knowledge and understanding of MND); and (3) suggestions for service change (better information and communication, including information on service entitlements; improved knowledge amongst professionals about MND; and some suggestions for service restructuring). This study brings a fresh approach to understanding the impacts of MND and the ways in which services can be improved to meet people's needs. The paper concludes with methodological considerations, the implications of the findings for practitioners and policy makers, and suggestions for further research.

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“The burden of care increases for the relatives during disease progression; moreover, due to symptoms and progression of the disease, the relatives’ lives become focused around their home and the patient, leading to a restricted social life and decreased activities (Trail et al., 2003; Hughes et al., 2005).”
Background
Online illness narratives about living with motor neurone disease: A quantitative analysis
O'Brien, M. R., & Clark, D. (2006) · British Journal of Neuroscience Nursing · doi:10.12968/bjnn.2006.2.8.22040 · Cited by 5
Clinical attention and assistance profile of patients with amyotrophic lateral sclerosis
Lima, N. M. F. V., & Nucci, A. (2011) · Arquivos de Neuro-Psiquiatria · doi:10.1590/s0004-282x2011000200005 · Cited by 5
“Hughes et al.(12) reported on the importance of quantifying health services experience of patients with neuromuscular diseases, including ALS.”
Background
Acquiring an evidence base in palliative care: challenges and future directions
McClement, S. (2006) · Expert Review of Pharmacoeconomics & Outcomes Research · doi:10.1586/14737167.6.1.37 · Cited by 5
Gaining understanding from patients' stories to inform neuroscience nursing practice
Bennett, B. (2007) · British Journal of Neuroscience Nursing · doi:10.12968/bjnn.2007.3.7.24273 · Cited by 5
Perspectives of Young People with Neuromuscular Diseases Regarding Their Choice of Educational Programs and Possibilities to Complete Program Requirements
Handberg, C., Munkholm, H., & Højberg, A.-L. (2024) · Global Qualitative Nursing Research · doi:10.1177/23333936241271126 · Cited by 4
“Because of an impaired functioning young people with NMD are especially at risk of being absent from school and leisure activities due to various symptoms of their NMD, and frequent follow-ups at the hospital (Hughes et al., 2005).”
Background
Speech-language pathologists’ confidence levels and professional development needs in motor neurone disease: An Australian survey
El‐Wahsh, S., Bonnor, S., Byrne, K., Maynes, V., McCluskey, C., Heatley, R., Signorelli, M., & Elbourn, E. (2025) · International Journal of Speech-Language Pathology · doi:10.1080/17549507.2025.2511950 · Cited by 3
“These issues with access to equipment in a timely manner are echoed in Hughes et al. (2005).”
Shared decision making in rare diseases: an overview
Pérez-Ramos, J., Sacks, A. A., Perestelo‐Pérez, L., Rivero‐Santana, A., Toledo‐Chávarri, A., González, N., & Serrano‐Aguilar, P. (2016) · Cited by 3
The diagnostic, therapeutic and assistance pathway for amyotrophic lateral sclerosis in a north‐eastern Italian region: satisfaction of patients and their caregivers
Palese, F., Gigli, G. L., Manganotti, P., Passadore, P., Rana, M., & Verriello, L. (2021) · Health & Social Care in the Community · doi:10.1111/hsc.13379 · Cited by 3
Negotiating the Beginning of Care: A Grounded Theory Study of Health Services for Amyotrophic Lateral Sclerosis
Alquati, S., Ghirotto, L., Panfilis, L. D., Autelitano, C., Bertocchi, E., Artioli, G., Sireci, F., Tanzi, S., & Sacchi, S. (2022) · Brain Sciences · doi:10.3390/brainsci12121623 · Cited by 3
“Complaints about inadequate emotional support [24], lack of continuity and coordination of services [25], unmet needs [26], and difficulties in accessing services [27] have been reported.”
Background
Accessing and Receiving Speech-Language Pathology Services at the Multidisciplinary Amyotrophic Lateral Sclerosis Clinic: An Exploratory Qualitative Study of Patient Experiences and Needs
Huynh, A., Adams, K., Barnett, C., Kalra, S., Zinman, L. H., & Yunusova, Y. (2023) · Journal of Speech Language and Hearing Research · doi:10.1044/2023_jslhr-23-00087 · Cited by 3
What are the Care Needs for People with Motor Neurone Disease and How Can Occupational Therapists Respond to Meet These Needs?
Foley, G. (2007) · British Journal of Occupational Therapy · doi:10.1177/030802260707000108 · Cited by 3
“However, only a small number of studies have actually explored how MND health care users perceive their health care services as meeting their needs (Van Teijlingen et al 2001, Kattilakoski 2004, Brown et al 2005, Hughes et al 2005).”
BackgroundInfluential
An Investigation of Perspectives of Respite Admission Among People Living With Amyotrophic Lateral Sclerosis and the Hospitals That Support Them
Nakai, M., Narita, Y., & Tomimoto, H. (2017) · Journal of Primary Care & Community Health · doi:10.1177/2150131917696940 · Cited by 3
“One essential service is respite care, which improves the well-being of both patients with ALS and family caregivers.(7-9) There has been a “nanbyo care” system in Japan since 1972, in which patients who meet certain criteria and have specific intractable diseases are able to obtain some medical, social, and financial…”
Background
Clinician Perspectives Highlight the Need for Early Dyadic Coping Skills for People Living With Amyotrophic Lateral Sclerosis
Rush, C. L., Lyons, C., Gittle, J., Seward, M., Scalia, J., Ho, D., Babu, S., Garret, M. A., Brizzi, K. T., Berry, J. D., et al. (2024) · Journal of Pain and Symptom Management · doi:10.1016/j.jpainsymman.2024.12.010 · Cited by 2
"As you can see, we plod along"; narratives of living with motor neurone disease in Wales
Sakellariou, D. (2014) · ORCA Online Research @Cardiff (Cardiff University) · Cited by 2
Existential loss in the context of Motor Neurone Disease: A hermeneutic phenomenological study
Harris, D. (2015) · doi:10.7490/f1000research.1111184.1 · Cited by 2
Factors of Importance for Continuing Education After Primary School in Young People With Neuromuscular Diseases—Patient‐Reported Outcomes From a National Survey
Handberg, C., Allergodt, K., Mahoney, A., & Højberg, A.-L. (2025) · International Journal of Pediatrics · doi:10.1155/ijpe/2604359 · Cited by 1
“Young people with NMD are at risk of being absent from school and leisure activities because of impaired functioning, various symptoms, and consequences of the NMD and frequent hospital evaluations and follow-ups [6].”
Banking on My Voice: Life with Motor Neurone Disease
Barry, I., & El‐Wahsh, S. (2025) · Healthcare · doi:10.3390/healthcare13141770 · Cited by 1
“We need to ensure that mental health care is seen as essential, not optional, in MND support [31,33,34].”
Existential concerns for people with motor neurone disease: Who is listening to their needs, priorities and preferences?
Harris, D. (2016) · British Journal of Occupational Therapy · doi:10.1177/0308022615616975 · Cited by 1
“Email: denise.harris13@outlook.com approach to care management of MND is necessary (Hughes et al., 2005), existential issues may occur in conjunction with functional/medical issues, and need early recognition and management.”
Background
Exploring reasons for declining and withdrawing from non-invasive ventilation among motor neurone disease patients : an interpretative phenomenological analysis
Ando, H. (2019) · University of Liverpool · doi:10.17638/03061722 · Cited by 1
A qualitative study of the preparedness of practitioners to care for people with motor neurone disease in their homes
Brewah, H. (2019) · Primary Health Care · doi:10.7748/phc.2019.e1515 · Cited by 1
Comunicación de malas noticias a pacientes con enfermedades neuro degenerativas
Hernández, I. M., & Matienzo, C. T. (2009) · DOAJ (DOAJ: Directory of Open Access Journals)
Perfil da assistencia domiciliar generica e fisioterapeutica e cuidados paliativos a um grupo de pacientes com esclerose lateral amiotrofica
Lima, N. M. F. V. (2009) · doi:10.47749/t/unicamp.2009.439215
Living with ALS
Priest, A. (2015) · Canadian Medical Association Journal · doi:10.1503/cmaj.141517
PATIENTS AND CARERS EXPERIENCE OF LIVING WITH A COMPLEX AND RARE NEUROLOGICAL AND PALLIATIVE DIAGNOSIS
Day, E., Garrood, L., Draper, A., & Smith, P. (2013) · BMJ Supportive & Palliative Care · doi:10.1136/bmjspcare-2013-000453b.6
AN INVESTIGATION INTO THE HOME SUPPORT NEEDS OF ADULTS LIVING WITH MULTIPLE SCLEROSIS, HUNTINGTON'S, PARKINSON'S AND MOTOR NEURONE DISEASES
Giles, M. J., & Lewin, G. F. (2008)
Living with ALS Perspectives of patients and next of kin
Olsson, A. G. (2010) · Gothenburg University Publications Electronic Archive (Gothenburg University)
LIFE CHOICES: LIVING WITH MOTOR NEURONE DISEASE
King, S. J. (2005)
habilidades del personal médico Comunicación de malas noticias a pacientes con enfermedades neurodegenerativas
Hernández, I. M., & Matienzo, C. T. (2009)
Non-Invasive Ventilation: New Challenges For Hospice Nurses
Palmer, R. (2011) · End of Life Journal · doi:10.1136/eoljnl-01-02.6
A Palliative Holistic Approach to MND Using Music Therapy
Mackinnon, D. H., & Upham, E. (2012) · End of Life Journal · doi:10.1136/eoljnl-02-01.4
The psychological distress of a man with end-stage MND
Scott, H. (2007) · End of Life Journal · doi:10.1136/eolc-01-02.7
Quality of life, Coping and need for Support during the ALS disease trajectory
Larsson, B. (2016)
Psychometric properties of the Korean version of the positive aspects of caregiving scale for family caregivers of people with amyotrophic lateral sclerosis
Chu, H. S., & Tak, Y. R. (2020) · Palliative & Supportive Care · doi:10.1017/s1478951520000371
“Thus, family caregivers face daily ongoing changes in the patient’s health condition as well as long-term adaptations (Hughes et al., 2005; King et al., 2009).”
Background

Authors: Hughes, R. A., Sinha, A., Higginson, I., Down, K., & Leigh, P. N.
Affiliations: University of Bristol (GB)
Newcastle University (GB)
King's College London (GB)
ORCID: Higginson, Irene
Leigh, P. Nigel
Venue: Health and Social Care in the Community
Publisher: Hindawi Limited
Published: 2005-01
Volume: 13
Issue: 1
Pages: 64-74
ISSN: 0966-0410 (ISSN-L)
1365-2524
DOI: 10.1111/j.1365-2524.2005.00530.x
OpenAlex: W1966590159
Cited by: 105
References: 35
Citations by year: 2026: 3 · 2025: 3 · 2024: 4 · 2023: 2 · 2022: 3 · 2021: 4 · 2020: 2 · 2019: 4 · 2018: 3 · 2017: 6 · 2016: 5 · 2015: 8 · 2014: 6 · 2013: 8 · 2012: 4
FWCI: 4.82
Type: journal article
Language: en
Open access: bronze
doi.org
Licence: doi.wiley.com/10.1002/tdm_license_1.1 (tdm, 3895 d)
Locations: Health & Social Care in the Community (publishedVersion)
PubMed (publishedVersion)
Research Portal (King's College London) (submittedVersion)
Newcastle University ePrints (Newcastle Univesity)
Funders: National Science Foundation
Joseph Rowntree Foundation
Motor Neurone Disease Association
Topics: 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
Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative and Oncologic Care
Keywords: motor neuron disease, palliative care, lived experience, service user perspectives, professional knowledge and attitudes, access to services, information provision, coping with illness, disability, social impact of illness, service reorganization, end-of-life care
MeSH terms: Activities of Daily Living, Adaptation, Psychological, Adult, Aged, Female, United Kingdom, Health Services Research, Humans, Interviews as Topic, London, Male, Middle Aged, Palliative Care, Patient Acceptance of Health Care, Personal Health Services, Professional-Patient Relations, Quality of Health Care, Motor Neuron Disease, Patient Satisfaction, Sickness Impact Profile, Qualitative Research

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Living with motor neurone disease: lives, experiences of services and suggestions for change

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