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

The DOI matches its Crossref record; 35 of the 35 references it cites were found in a registry or an index.

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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Research works printed but not linked: 10

  1. Davies E.A., 1998, Journal of the Royal College of Physicians of London, 32, 406
  2. Department of Health, 2002, Higher standards to improve services for people with long term conditions
  3. Gilbert G.N., 1983, Accounts and Actions: Surrey Conferences on Sociological Theory and Method
  4. Her Majesty's Government, 2001, Health and Social Care Act 2001
  5. Jenkinson C., 1994, Journal of Neurology, 246, 16
  6. Lambeth, Southwark and Lewisham Health Authority, 2001, Lambeth, Southwark and Lewisham Health Improvement and Modernisation Programme 2001-2004.
  7. Motor Neurone Disease Association, 2000, Standards of Care to Achieve Quality of Life for People Affected by Motor Neurone Disease
  8. Secretary of State For Health, 2000, The NHS Plan. A Plan for Investment, A Plan for Reform.
  9. Secretary of State For Health., 2000, The NHS Plan. The Government's Response to the Royal Commission on Long Term Care
  10. Turner M., 2001, The Practitioner, 245, 530

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Metadata

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
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
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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