What to Expect: Information and the Management of Uncertainty in Parkinson's Disease

ABSTRACT

The onset of a chronic illness such as Parkinson's Disease (PD) demands an urgent response to life's fundamental questions. General practitioners (GPs) who care for people with PD may also face anxieties, but these affect their professional rather than their personal lives. However, uncertainty at whatever level requires managing. Both patients and GPs adopt various strategies to resolve their difficulties. One aspect of this process concerns coming to understand, and explaining what to expect of, the disease. Using data from in-depth interviews with people with PD and a separate group of GPs, this paper explores how the differing experience and management of uncertainty by both parties may, if unappreciated by doctors, hinder effective communication between them. Conversely, an imaginative understanding of what PD means may help transform people's experience of the illness. Training GPs to develop skills in understanding the special uncertainties of PD is considered.