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

• Main Authors: Annegrete Juul Nielsen, Lone Grøn
• Format: Article
• Language: English
• Published: Linköping University Electronic Press 2012-11-01
• Series: Culture Unbound: Journal of Current Cultural Research
• Subjects: Self-care; self-management; chronic disease; health education; lay and expert knowledge; patient participation
• Online Access: http://dx.doi.org/10.3384/cu.2000.1525.124425

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.