'Homemade': Building, mending, and coordinating a care network. (September 2019) - Bruni, Attila
Abstract: In recent decades, longer life expectancy, the consequent greater number of patients with often concurrent diseases, and the need of healthcare institutions to reduce the costs of services, have engendered changes in all European healthcare systems. On one side, healthcare systems increasingly rely on the self-management skills of patients, who undertake a growing amount of 'sickness work' from which they are relieved only in the case of severe illness. On the other, the inability of public healthcare systems to satisfy the increased demand for care has led to the growth of private healthcare organizations as well as cooperatives of health professionals who offer their services privately. The care of citizens, therefore, is increasingly distributed across networks of actors with very different objectives, logics of action and professional backgrounds (public and private healthcare organizations, community medical services, voluntary organizations). Despite the attention devoted by social studies of medicine to the work done by citizens in supporting the work of clinicians and nurses, the work performed in connection to the management of care networks have been only marginally investigated. Drawing on a qualitative research carried out in the Province of Trento (Italy) and focused on the different ways in which elderly people with chronic conditions manage their conditions outside the healthcare and welfare institutions, in this paper we are interested in deepening the understanding of the invisible work citizens perform in connection to the management of care services and professionals. That is, the work needed in order to activate, mend and coordinate complex networks of care. Highlights: Patients and relatives everyday manage complex networks of services. They activate, mend and coordinate networks of healthcare and welfare services. This invisible work is 'homemade', involving actors with no professional skills. Caregivers follow short-term goals, shifting between social and health care. Organizational facilities intended to help citizens appear sometimes of scant utility.