‘I’ll tell you what suits me best if you don’t mind me saying’: ‘lay participation’ in health‐care

Abstract

‘I’ll tell you what suits me best if you don’t mind me saying’: ‘lay participation’ in health‐care Increasing ‘lay participation’ in healthcare has become a popular notion in recent years and is generally considered to be a good thing in both nursing and wider policy circles. Yet despite the widespread acceptance of this overall idea, there is a dearth of theorising in this area. This has resulted in a lack of conceptual clarity which has not only hamstrung the development of empirical work in the field, but has also led to a tendency by both nurses and policy‐makers to assume that greater ‘lay participation’ in health will lead to a concomitant increase in lay power vis‐à‐vis health professionals. The data presented in this paper indicate that this is, at best, an over‐simplistic assumption and, at worst, an erroneous one. Drawing on sociological theories of the division of labour, I suggest that one way in which we might begin to clarify our thinking in this area is by differentiating between the ‘role’ and ‘task’ components of ‘lay participation’. I illustrate my argument with reference to two separate ethnographic studies undertaken between 1994 and 1998 in which participation at the level of the individual was examined.

Patient participation in hospital care: Nursing staffs' point of view

“…A number of studies have reported nurses' perceptions and experiences of patient participation in nursing care . Four primary nurses in an ethnographic study distinguished a formal and an informal dimension of patient participation and identified mutual informing and negotiation between nurse and patient as a precondition for participation .…”

“…Four primary nurses in an ethnographic study distinguished a formal and an informal dimension of patient participation and identified mutual informing and negotiation between nurse and patient as a precondition for participation . Moreover, ethnographic data from two surgical wards explored the concept of participation illustrating the role–task distinction in participation at the individual level, while emphasizing the need for greater clarity of it . A study exploring nurses' practices and perceptions demonstrated a contrast between the ideas nurses expressed and the observed practice related to participation, highlighting that it is difficult to achieve even at the basic level of care provision .…”

Patients’ perceptions of barriers for participation in nursing care

“…The word participation has been discussed in differing contexts. Collective participation practised as lay participation in the formulation of policy, the commissioning of services and in research (8), or indirect participation as a third party parent, close relative or carer (9). Individual participation refers to active patient involvement in all aspects of own care.…”

Nurse strategies for optimising patient participation in nursing care

“…It can be carried out collectively, indirectly or individually: (i) collective participation as a citizen in e.g. research or formulation of policy when commissioning healthcare services (10); (ii) indirect participation as a parent, significant other or carer (11) and (iii) individual participation as an active patient in e.g. health care and promotion and social care (e.g.…”