Skip to main content
×
×
Home

Problems in evaluating the consequences of disabling illness: the case of multiple sclerosis

  • Annette Lawson (a1), Ian Robinson (a1) and Claire Bakes (a1)
Synopsis

There is a need for a method, useful both to the clinician and to the research worker which can assess both the ‘quantity’ and the ‘quality’ of daily life. In this paper two ‘diary’ methods are described for obtaining accounts of daily activities, social contacts and patterns of interaction from people diagnosed as having multiple sclerosis. The information obtained is compared with that derived from a major decennial national survey of the population aged over 4 years and from a selected group of matched non-patient controls. The paper is divided into two parts, each concentrating on one of the techniques. The first is a postal 24-hour written account; the second a detailed tape-recorded interview known as the ‘Standard Day Interview’. Difficulties and advantages in using these approaches to assess both the quantitative and the qualitative changes during disabling illness are discussed and proposals for developing the methods are presented. Indications of substantive variation in the use of time by samples drawn from the ‘healthy’ and from populations with multiple sclerosis are reported.

Copyright
Corresponding author
1Address for correspondence: Dr Annette Lawson, Department of Sociology, Brunel University., Uxbridge, Middlesex UB8 3PH.
References
Hide All
BBC Audience Research Department (1976). The People's Activities and the Use of Time. BBC: London.
Benjamin, J. (1976). The Northwick Park ADL Index. Occupational Therapy 39, 301306.
Berk, R. A. & Berk, S. F. (1979). Labor and Leisure at Home. Sage Library of Social Research No. 87. Sage: London.
Bernstein, B. (1971). Class Codes and Control. Routledge & Kegan Paul: London.
Blaxter, M. (1976). The Meaning of Disability. Heinemann: London.
Brain, W. R. (1977). Diseases of the Nervous System. Oxford University Press: London.
Brunel–ARMS Research Unit (1983). MS people – a demographic profile. General Report No. 2.
Burnett, J. (ed.) (1974). Useful Toil. Allen Lane: London.
Buxton, J. (1983). The economics of heart transplant programmes: measuring the benefits. In Measuring the Social Benefits of Medicine (ed. Smith, G. Teeling), p. 48. OHE: London.
Cooper, J. & McNeil, J. (1970). The Leyton Obsessional Inventory. Psychological Medicine 1, 4864.
Douglas, J. W. B., Lawson, A., Cooper, J. E. & Cooper, E. (1968). Family interaction and the activities of young children. Journal of Child Psychology and Psychiatry 9, 157171.
Douglas, J. W. B., Cooper, J. E., Lawson, A., Cooper, E., McNeil, J., Alderman, B. & Ingleby, J. E. (1971). Family interaction and the activities of children. MRC Internal Report.
Geddes, D. (1983). Measurement of the benefits in respiratory disease. In Measuring the Social Benefits of Medicine (ed. Teeling Smith, G.), pp. 116120. OHE: London.
Goble, R. (1976). Report of the group discussing the relevance of an ADL Index in normal environmental conditions. Occupational Therapy 39, 300.
Gough, R. (1981). The History of Myddle (ed. Hey, D.). Penguin: Harmondsworth.
Harris, A. I. (1971). Handicapped and Impaired in Great Britain. HMSO: London.
Harrison, T. (1939). Britain by Mass Observation. Penguin: Harmondsworth.
Hunt, S. M., McEwen, J., McKenna, S. P. & Backett, E. M. (1982). The Nottingham Health Profile. Medical School: University of Nottingham (mimeo).
Hyman, H., Cobb, W. J., Feldman, J., Hart, C. & Stember, C. (1978). The technique of interviewing. In Modern Sociology (2nd edn) (ed. Worsley, P.), pp. 103113. Penguin: Harmondsworth.
IBA Audience Research Department (1978). Lonely People and the Media: Report on a Study. IBA: London.
Jencks, C. (1973). Inequality: A Re-assessment of the Effect of Family and Schooling in America. Allen Lane: London.
Kirp, D. (1982). Just Schools: The Idea of Racial Equality in American Education. University of California Press: Berkeley.
Kurland, L. T. & Stazio, A. (1965). An appraisal of population studies of multiple sclerosis. Annals of the New York Academy of Sciences 122, 520554.
Kurtzke, J. F. (1980 a). Multiple sclerosis: an overview. In Clinical Neuroepidemiology (ed. Rose, F. C.), pp. 170195. Pitman Medical: London.
Kurtzke, J. F. (1980 b). Epidemiological contributions to multiple sclerosis: an overview. Neurology 30, 6169.
Kurtzke, J. F. (1981). Initial proposal for a uniform minimal record of disability. Acta Neurologica Scandinavica 65, Suppl. 87, 4851.
Laslett, P. (1965). The World We Have Lost. Methuen: London (second edn 1977).
Lawson, A. & Ingleby, J. D. (1974). Daily routines of pre-school children: effects of age, birth order, sex and social class, and developmental correlates. Psychological Medicine 4, 399415.
LeRoy Ladurie, E. (1978). Montaillou. Cathars and Catholics in a French Village. Scolar.
Levine, S. (1956). A further study of infantile handling and adult avoidance learning. Journal of Personality 25, 7080.
Lincoln, N. (1981). Discrepancies between capabilities and performance of activities of daily living in multiple sclerosis patients. Institute of Rehabilitative Medicine 3, 8488.
Mass Observation (1951). The Housewife's Day. Mass Observation Bulletin No. 42, esp. p. 2.
McAlpine, D., Lumsden, C. E. & Acheson, E. D. (1972). Multiple Sclerosis: A Reappraisal. Churchill Livingstone: Edinburgh.
McLaine, I. (1979). Ministry of Morale: Home Front Morale and Ministry of Information in World War II, p. 7. Allen & Unwin: London.
Moss, L. & Goldstein, H. (eds.) (1979). The Recall Method in Social Surveys. Studies in Education No. 9. Inst. of Education: London/NFER Publishing Company: Windsor.
New Statesman (1982). An appeal for diarists of the Falklands war. Classified advertisement columns, May.
Oakley, A. (1974). Housewife. Robertson: London.
Patrick, D. L., Darby, S. C., Green, S., Horton, G., Locker, D. & Wiggins, R. D. (1981). Screening and disability in the inner city. Journal of Epidemiology and Community Health 35, 6570.
Pocock, D. (1984). Mass observation returns to look at everyday lives. Guardian 7 May.
Robinson, I., Bakes, C. & Lawson, A. (1983). Questioning the facts: more women than men?Paper delivered to BSA Medical Sociology Conference,York.
Sainsbury, S. (1973). Measuring Disability, p. 10. Occasional Papers on Social Administration No. 54. The Social Administration Research Trust/Bell: London.
Staples, D. & Lincoln, N. (1979). Intellectual impairment in multiple sclerosis and its relation to functional abilities. Rheumatology and Rehabilitation 18, 153160.
Stone, L. (1977). The Family, Sex and Marriage in England 1500–1800. Weidenfeld & Nicholson: London.
Szalai, A. (ed.) (1972). The Use of Time: Daily Activities of Urban and Suburban Populations in Twelve Countries. Mouton: The Hague.
Whiting, S. & Lincoln, N. (1980). An ADL assessment for stroke patients. Occupational Therapy 43, 4446.
Wood, P. H. N. (1975). Classification of Impairments and Handicaps. WHO: Geneva.
World Health Organization (1980). International Classification of Impairments, Disabilities and Handicaps. WHO: Geneva.
Zubek, J. (ed.) (1969). Sensory Deprivation: Fifteen Years of Research. Appleton Century Crofts: New York.
Recommend this journal

Email your librarian or administrator to recommend adding this journal to your organisation's collection.

Psychological Medicine
  • ISSN: 0033-2917
  • EISSN: 1469-8978
  • URL: /core/journals/psychological-medicine
Please enter your name
Please enter a valid email address
Who would you like to send this to? *
×

Metrics

Full text views

Total number of HTML views: 0
Total number of PDF views: 8 *
Loading metrics...

Abstract views

Total abstract views: 59 *
Loading metrics...

* Views captured on Cambridge Core between September 2016 - 12th June 2018. This data will be updated every 24 hours.