Standardising the Lay: Logics of Change in Programs of Disease Self-management

Authors

  • Annegrete Juul Nielsen Department of Public Health, University of Copenhagen, Denmark
  • Lone Grøn KORA, Danish Institute for Local and Regional Government Research, Denmark

DOI:

https://doi.org/10.3384/cu.2000.1525.124425

Keywords:

Self-care, self-management, chronic disease, health education, lay and expert knowledge, patient participation

Abstract

The health political discourse on self-care is dominated by the view that the selfmanaging patient represents a more democratic and patient-centric perspective, as he or she is believed to renegotiate the terms on which patient participation in health care has hitherto taken place. The self-managing patient is intended as a challenge to traditional medical authority by introducing lay methods of knowing disease. Rather than a meeting between authoritative professionals and vulnerable patients, the self-managing patient seeks to open up new spaces for a meeting between experts. The present paper questions these assumptions through an ethnographic exploration of a patient-led self-management program called the Chronic Disease Self-Management Program. The program is concerned with what its developers call the social and mental aspects of living with a chronic disease and uses trained patients as role models and program leaders. Drawing inspiration from Annemarie Mol’s term ’logic’, we explore the rationale of ’situations of selfmanagement’ and identify what we call a ’logic of change’, which involves very specific ideas on how life with a chronic condition should be dealt with and directs attention towards particular manageable aspects of life with a chronic condition. This logic of change entails, we argue, a clash not between ’medical’ and ’lay’ forms of knowledge but between different logics or perceptions of how transformation can be achieved: through open-ended and ongoing reflection and experimentation in social settings or through standardised trajectories of change. Returning to the literature on lay forms of knowledge and illness perspectives, we question whether programs such as the Chronic Disease Self-Management Program – despite its apparent patient-centric perspective – reproduces classical hierarchical relations between lay and expert knowledge, albeit in new forms.

References

Bandura, Albert (1986): Social Foundations of Thought and Action,New Jersey: Prentice Hall.

Bandura, Albert (1997): Self-Efficacy: The Exercise of Control,New York: W.H. Freeman.

Berg, Marc & Annemarie Mol (1998): Differences in Medicine: Unraveling Practices, Techniques, and Bodies, Durham, NC & London: Duke University Press.

Biehl, Joao, Byron Good & Arthur Kleinman (2007): Subjectivity: Ethnographic Investigations, Berkeley, Los Angeles and London: University of California Press.

Bury, Michael (2000): Health and Illness in a Changing Society, Second Edition, London: Routledge.

Conrad, Peter (1992): ‘Medicalisation and Social Control’, Annual Review of Sociology,18, 209-232.

Corbin, Juliet M. & Anselm L. Strauss (1988): Unending Work and Care: Managing Chronic Illness at Home, San Francisco: Jossey-Bass.

Danish National Board of Health (2005a): The Patient Education Program: Living a Healthy Life with Chronic Disease, Report on Pilot Test, Copenhagen: Danish National Board of Health.

Danish National Board of Health (2005b): Chronic Disease: Patient, Health Care System and Society, Copenhagen: Danish National Board of Health.

Danish National Board of Health (2006): Patients with Chronic Diseases: Self-Monitoring, Self-Treatment and Patient Education, Copenhagen: Danish National Board of Health.

Danish National Board of Health (2009): Patient Education: A Health Technology Assessment, Copenhagen: Danish National Board of Health.

Department of Health (2001): The Expert Patient: A New Approach to Chronic Disease Management for the 21st Century, London: Department of Health.

Epstein, Steven (1996): Impure Science: AIDS, Activism and the Politics of Knowledge, Berkeley, Los Angeles and London: University of California Press.

Greenhalgh, Trisha (2009): ‘Chronic Illness: Beyond the Expert Patient’, British Medical Journal, 338, 629-631.

Grøn, Lone (2005): Winds of Change, Bodies of Persistence. Health Promotion and Lifestyle Change in Institutional and Everyday Contexts, PhD dissertation, Aarhus: Department of Anthropology and Ethnography, University of Aarhus.

Grøn, Lone, Martin S.Buch, Mikka Nielsen, Eline Boisen & Laura E.B. Rahbæk (2012): Egenomsorg og patientuddannelser i grænsefladen mellem medicin og humaniora, DSI rapport. København: Dansk Sundhedsinstitut[Self-Care and Patient Education in the Borderland between Medicine and the Humanities, DSI Report, Copenhagen: Danish Institute of Health Care Services Research].

Hogle, Linda F. (2002): ‘Claims and Disclaimers: Whose Expertise Counts?’, Medical Anthropology, 21:3-4, 275-306.

Illich, Ivan (2010): Limits to Medicine. Medical Nemesis: The Expropriation of Health, Harmondsworth: Penguin Books.

Jensen, Casper Bruun (2010): Ontologies for Developing Things: Making Health Care Futures through Technology, Rotterdam: Sense Publishers.

Kleinman, Arthur (1980): Patients and Healers in the Context of Culture. Explorations in the Borderland between Anthropology, Medicine and Psychiatry, Berkeley, Los Angeles and London: University of California Press.

Kleinman, Arthur (1988): The Illness Narrative: Suffering, Healing & the Human Condition, New York: Basic Books.

Kleinman, Arthur & Joan Kleinman (1995): ‘Suffering and Its Professional Transformation: Toward an Ethnography of Interpersonal Experience’, Arthur Kleinman (ed.), Writing at the Margin. Discourse Between Anthropology and Medicine, Berkeley, Los Angeles and London: University of California Press.

Lindsay, Sally & Hubertus J.M.Vrijhoef (2009): ‘Introduction – A Sociological Focus on “Expert Patients”’, Health Sociology Review, 18:2, 139-144.

Lorig, Kate (1996): ‘Chronic Disease Self-Management: A Model for Tertiary Prevention’, American Behavioral Scientist,39, 676.

Lorig, Kate & Halsted Holman (2003): ‘Self-Management Education: History, Definition, Outcomes, and Mechanisms’, Annals of Behavioral Medicine, 26:1, 1–7.

Lorig, Kate, Holman Halsted, David Sobel, Diana Laurent, Virginia Gonzáles & Marian Minor (2000): Living a Healthy Life with Chronic Conditions: Self-Management of Heart Disease, Arthritis, Diabetes, Asthma, Bronchitis, Emphysema & Others, Colorado: Bull Publishing Company.

Lupton, Deborah (1994): Medicine as Culture: Illness, Disease and the Body in Western Societies, London: Sage.

Mattingly, Cheryl (1998): Healing Dramas and Clinical Plots: The Narrative Structure of Experience, Cambridge: Cambridge University Press.

Mattingly, Cheryl, Lone Grøn & Lotte Meinert (2011): ‘Chronic Homework in Emerging Borderzones of Health Care’, Culture, Medicine and Psychiatry, 35:3, 347-375.

Mol, Annemarie (2008): The Logic of Care: Health and the Problem of Patient Choice, London and New York: Routledge.

Nielsen, Annegrete Juul (2010): Traveling Technologies and Transformations in Health Care, PhD thesis, Copenhagen: Copenhagen Business School Press.

Nielsen, Annegrete Juul & Casper Bruun Jensen (forthcoming): ‘Travelling Frictions: Global Disease Self-Management in Local Versions’, Science Studies.

Rapp, Rayna (1999): Testing Women, Testing the Fetus: The Social Impact of Amniocentesis in America, London: Routledge.

Stam, Henderikus J. (1987): ‘The Psychology of Control: A Textual Critique’, Henderikus J. Stam, Timothy B. Rogers, & Kenneth J. Gergen (eds): The Analysis of Psychological Theory: Metapsychological Perspectives, Washington: Hemisphere.

Strauss, Anselm (1975): Chronic Illness and the Quality of Life, Saint Louis: The C. V. Mosby Company.

Taylor, David & Michael Bury (2007): ‘Chronic Illness, Expert Patients and Care Transition’, Sociology of Health and Illness, 29, 27-45.

Wilson, Patricia, Sally Kendall & Fiona Brooks (2007): ‘The Expert Patient Programme: A Paradox of Patient Empowerment and Medical Dominance’, Health and Social Care in the Community, 15:5, 426-438.

Wilson, Patricia (2001): ‘A Policy Analysis of the Expert Patient in the United Kingdom: Self-Care as an Expression of Pastoral Power?’, Health and Social Care in the Community, 9:3, 134-142.

Young, Allan (1982): ‘The Anthropologies of Illness and Sickness’, Annual Review of Anthropology, 11, 257-285.

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Published

2012-11-09

How to Cite

Juul Nielsen, A. and Grøn, L. (2012) “Standardising the Lay: Logics of Change in Programs of Disease Self-management”, Culture Unbound, 4(3), pp. 425–442. doi: 10.3384/cu.2000.1525.124425.

Issue

Section

Theme: Self-care Translated into Practice