The Expert Patients Programme: a paradox of patient empowerment and medical dominance

PM Wilson, S Kendall, F Brooks - Health & social care in the …, 2007 - Wiley Online Library
PM Wilson, S Kendall, F Brooks
Health & social care in the community, 2007Wiley Online Library
Self‐care is seen as a key element in managing resource demand in chronic disease and is
also perceived as an empowering right for patients. The Chronic Disease Self‐Management
Programme developed in the USA has been adopted in a number of countries and in the UK
has been as adapted as the Expert Patients Programme. However, despite its potential as a
lay‐led empowering initiative, the Expert Patients Programme has been criticised as
perpetuating the medical model and failing to reach those in most need. This paper revisits a …
Abstract
Self‐care is seen as a key element in managing resource demand in chronic disease and is also perceived as an empowering right for patients. The Chronic Disease Self‐Management Programme developed in the USA has been adopted in a number of countries and in the UK has been as adapted as the Expert Patients Programme. However, despite its potential as a lay‐led empowering initiative, the Expert Patients Programme has been criticised as perpetuating the medical model and failing to reach those in most need. This paper revisits a critique of the Expert Patients Programme, and drawing upon a qualitative study seeks to explore whether the Expert Patients Programme enables empowerment or replicates traditional patterns of the patient–professional relationship. A grounded‐theory approach was adopted utilising focus groups, in‐depth interviews and participant observation. Data were analysed through the constant comparative method and the development of codes and categories. Conducted in the relatively affluent area of the south‐east of England, this paper draws on data from 66 individuals with a chronic illness who were knowledgeable, active and informed. The study revealed a number of characteristics common to expert patients that were linked to a systematic, proactive and organised approach to self‐management, a clear communication style and the ability to compartmentalise emotion. The study included participant observation of an Expert Patients Programme and a professional‐led self‐management course. The paradoxical nature of the Expert Patients Programme was revealed, for whilst there was evidence that it reinforced the medical paradigm, there was a concurrent acknowledgement and support for the subjective experience of living with a long‐term condition. Furthermore, whilst the policy emphasis has been on individual empowerment within the Expert Patients Programme, there is some evidence that it may be triggering a health consumer movement.
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