Citizens as Active Participants in Integrated Care: Challenging the Field’s Dominant Paradigms

Abstract

Policy makers, practitioners and academics often claim that care users and other citizens should be ‘at the center’ of care integration pursuits. Nonetheless, the field of integrated care tends to approach these constituents as passive recipients of professional and managerial efforts. This paper critically reflects on this discrepancy, which, we contend, indicates both a key objective and an ongoing challenge of care integration; i.e., the need to reconcile (1) the professional, organizational and institutional frameworks by which care work is structured with (2) the diversity and diffuseness that is inherent to pursuits of active user and citizen participation. By identifying four organizational tensions that result from this challenge, we raise questions about whose knowledge counts (lay/professional), who is in control (local/central), who participates (inclusion/exclusion) and whose interests matter (civic/organizational). By making explicit what so often remains obscured in the literature, we enable actors to more effectively address these tensions in their pursuits of care integration. In turn, we are able to generate a more realistic outlook on the opportunities, limitations and pitfalls of citizen participation.