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

Health and Social Care in the Community

Volumn 13, Issue 1, 2005, Pages 64-74

  Hughes, Rhidian A ^a   Sinha, Anu ^b   Higginson, Irene ^c   Down, Keren ^c   Leigh, P Nigel ^c  

^a UNIVERSITY OF BRISTOL   (United Kingdom)

^b NEWCASTLE UNIVERSITY   (United Kingdom)

^c KING'S COLLEGE LONDON   (United Kingdom)

Author keywords

Motor neurone disease; Palliative care; Policy; Practice; Qualitative research; User involvement

Indexed keywords

ADAPTIVE BEHAVIOR; ADULT; AGED; ARTICLE; DAILY LIFE ACTIVITY; FEMALE; HEALTH CARE QUALITY; HEALTH SERVICE; HEALTH SERVICES RESEARCH; HUMAN; HUMAN RELATION; INTERVIEW; MALE; MIDDLE AGED; MOTOR NEURON DISEASE; ORGANIZATION AND MANAGEMENT; PALLIATIVE THERAPY; PATHOPHYSIOLOGY; PATIENT ATTITUDE; PATIENT SATISFACTION; PSYCHOLOGICAL ASPECT; QUALITATIVE RESEARCH; SICKNESS IMPACT PROFILE; STANDARD; UNITED KINGDOM;

ACTIVITIES OF DAILY LIVING; ADAPTATION, PSYCHOLOGICAL; ADULT; AGED; FEMALE; GREAT BRITAIN; HEALTH SERVICES RESEARCH; HUMANS; INTERVIEWS; LONDON; MALE; MIDDLE AGED; MOTOR NEURON DISEASE; PALLIATIVE CARE; PATIENT ACCEPTANCE OF HEALTH CARE; PATIENT SATISFACTION; PERSONAL HEALTH SERVICES; PROFESSIONAL-PATIENT RELATIONS; QUALITATIVE RESEARCH; QUALITY OF HEALTH CARE; SICKNESS IMPACT PROFILE;

EID: 12344250578     PISSN: 09660410     EISSN: None     Source Type: Journal    
DOI: 10.1111/j.1365-2524.2005.00530.x     Document Type: Article

References (40)

1. Addington-Hall J. (2002) Research sensitivities to palliative care patients. European Journal of Cancer Care 11, 220-224.
2. Boeiji H.R., Duijnstee M.S.H., Grypdonck M.H.F. & Pool A. (2002) Encountering the downward phase: biographical work in people with multiple sclerosis living at home. Social Science and Medicine 55, 881-893.
3. Bury M. (1982) Chronic illness as biographical disruption. Sociology of Health and Illness 4, 451-468.
4. Bury M. (2001) Illness narratives: Fact or fiction? Sociology of Health and Illness 23, 263-285.
5. Carter H., Mckenna C., Macleod R. & Green R. (1998) Health professionals′ responses to multiple sclerosis and motor neurone disease. Palliative Medicine 12, 383-394.
6. Cohen M.Z., Kahn D.L. & Steeves R.H. (2002) Making use of qualitative research. Western Journal of Nursing Research 24, 454-471.
7. Corbin J.M. & Strauss A.L. (1988) Unending Work and Care: Managing Chronic Illness at Home. Jossey Bass, San Francisco, CA.
8. Cornwell J. (1984) Hard-earned Lives: Accounts of Health and Illness from East London. Tavistock, London.
9. Corr B., Frost E., Traynor B.J. & Hardiman O. (1998) Service provision for patients with ALS/MND: a cost-effective multidisciplinary approach. Journal of the Neurological Sciences 160 (Suppl. 1), S141-S145.
10. Davies E.A., Hall S.M., Clarke C.R.A., Bannon M.P. & Hopkins A.P. (1998) Do research interviews cause distress or interfere in management? Experience from a study of cancer patients. Journal of the Royal College of Physicians of London 32, 406-411.
11. De Raeve L. (1994) Ethical issues in palliative care research. Palliative Medicine 8, 298-305.
12. Denzin N.K. (1978) The Research Act: A Theoretical Introduction to Sociological Methods. McGraw-Hill, London.
13. Department of Health (2002) Higher standards to improve services for people with long term conditions. Press release 2002/0271. Department of Health, London.
14. Gilbert G.N. & Abell P. (Eds) (1983) Accounts and Actions: Surrey Conferences on Sociological Theory and Method. Gower, Aldershot.
15. Goldstein L.H., Adamson M., Jeffrey L., Down K., Barby T., Wilson C. & Leigh P.N. (1998) The psychological impact of MND on patients and carers. Journal of the Neurological Sciences 160 (Suppl. 1), S114-S121.
16. Hansson B. & Ahlstrom G. (1999) Coping with chronic illness: a qualitative study of coping with postpolio syndrome. International Journal of Nursing Studies 36, 255-262.
17. Haverkamp L.J., Appel V. & Appel S.H. (1995) Natural history of amyotrophic lateral sclerosis in a database population. Brain 118, 707-719.
18. Her Majesty's Government (2001) Health and Social Care Act 2001. The Stationery Office, London.
19. Jenkinson C., Fitzpatrick R., Brennan C., Bromberg M. & Swash M. (1994) Development and validation of a short measure of health status for individuals with amyotrophic lateral sclerosis /motor neurone disease: the ALSAQ-40. Journal of Neurology 246 (3), 16-21.
20. Lambeth, Southwark and Lewisham Health Authority (2001) Lambeth, Southwark and Lewisham Health Improvement and Modernisation Programme 2001-2004. Directorate of Health Business Management, London.
21. Lawton J. (2003) Lay experience of health and illness: past research and future agendas. Sociology of Health and Illness 25, 23-40.
22. Layder D. (1998) Sociological Practice. Sage, Thousand Oaks, CA.
23. Lee R.M. (1993) Doing Research on Sensitive Topics. Sage, Thousand Oaks, CA.
24. Lowton K. & Gabe J. (2003) Life on a slippery slope: perceptions of health in adults with cystic fibrosis. Sociology of Health and Illness 25, 289-319.
25. Marshall C. & Rossman G.B. (1999) Designing Qualitative Research, 3rd edn. Sage, Thousand Oaks, CA.
26. Miles M.B. & Huberman A.M. (1994) Qualitative Data Analysis. An Expanded Sourcebook, 2nd edn. Sage, Thousand Oaks, CA.
27. Miller R.G., Rosenberg M.D., Gelinas D.F., et al. (1999) Practice parameter: the care of the patient with amyotrophic lateral sclerosis (an evidence-based review). Neurology 52, 1311-1323.
28. Motor Neurone Disease Association (2000) Standards of Care to Achieve Quality of Life for People Affected by Motor Neurone Disease. Motor Neurone Disease Association, Northampton.
29. O'Brien T., Kelly M. & Saunders C. (1992) Motor neurone disease: a hospice perspective. British Medical Journal 304, 459-460.
30. Ong B.N. & Jordan K. (1997) Health experiences of elderly people in an outer London area. Sociological Research Online, 2 [URL http://www. socresonline.org.uk/socresonline/2/1/5.html].
31. Pierret J. (2003) The illness experience: state of knowledge and perspectives for research. Sociology of Health and Illness 25, 4-22.
32. Rappert B. (1997) Users and social science research; policy, problems and possibilities. Sociological Research Online, 2 [URL http://www.socresonline. org.uk/socresonline/2/3/10.html].
33. Richard L. (1999) Using NVIVO in Qualitative Research. Sage, Thousand Oaks, CA.
34. Robinson I. & Hunter M. (1998) Motor Neurone Disease. Routledge, London.
35. Secretary of State For Health (2000a) The NHS Plan. A Plan for Investment, A Plan for Reform. Cm 4818-I. The Stationery Office, London.
36. Secretary of State For Health. (2000b) The NHS Plan. The Government's Response to the Royal Commission on Long Term Care. Cm 4818-II. The Stationery Office, London.
37. Shaw P.J. (1999) Motor neurone disease. British Medical Journal 318, 1118-1121.
38. Small N. & Rhodes P. (2000) Too III to Talk? User Involvement and Palliative Care. Routledge, London.
39. Turner M. (2001) The treatment of motor neurone disease. The Practitioner 245, 530-538.
40. Young C.A., Tedman B.M. & Williams I.R. (1995) Disease progression and perceptions of health in patients with motor neurone disease. Journal of the Neurological Sciences 129, 50-53.