Cultural explanations of psychotic illness and care-seeking of family caregivers in Java, Indonesia

Abstract

The cultural understanding of illness among caregivers of first-episode psychotic persons is a crucial issue. Not only does it influence caregivers’ care-seeking behavior and length of time until receiving medical treatment (known as the ‘duration of untreated psychosis’ or DUP), but it also predicts the outcome of the illness. This article aims to explore cultural understanding and care-seeking behavior among caregivers of psychotic patients in Java, Indonesia. Data for this article have been taken from two studies conducted by our research group in Yogyakarta, Indonesia. Methods of data collection include surveys, case studies, ethnographic fieldwork, and in-depth interviews. Results of analyses, within and across studies, indicate that caregivers have employed diverse cultural explanatory models in order to understand psychotic illness. Local cultural beliefs, including possession and forms of black magic, were among the most common initial concepts held by family members in relation to psychosis. This echoes broader cultural beliefs in Java. However, it was not uncommon for caregivers to also understand illness in psychological terms (such as frustration, disappointment, and stress) and attached medical explanations. Caregivers’ understanding of illness also changed over time following the changing course of the illness. Both models of illness and the rapidity of care-seeking are also related to the acuteness of onset. This article concludes that it is important for mental health providers, as well as those designing systems of care, to understand the diversity and changing nature of caregivers’ cultural understanding of psychotic illness.